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MaryS42
06-13-2011, 02:02 AM
Hi All well this is a new one Alan has now started having siezures quite small ones to begin with about 3 to 5 per day then they started getting worse and he was admitted to hospital during the night last last after 2 violent siezures one after the other.He then had another at 4.10am worse one yet and once again the doctors dont know whats causing them and when I asked if it could be Lupus attacking the brain they said they didnt know enough about Lupus to answer my question so I'm afraid its down to you guys again!!!! what do you all think has anyone else experienced siezures these only started last thursday 9th June never had a siezure before this in his life.God I hate this disease I pray a cure will be found so that you all can end what seems to be endless suffering and is it just me because im new to all this or does it feel sometimes like no-one cares what we're going through and that even the medical "professionals"(I use the term loosely) dont seem to care because they simply dont know enough about Lupus.!!!! Sorry just had to vent.
Love to All Mary.x.

steve.b
06-13-2011, 06:24 AM
sorry to hear about alan.
yes seizures can be lupus related.
mari and rob would be 2 of the best to answer you.
they both have seizures for different reasons.

i an lucky and do not get them.... touch wood.

tgal
06-13-2011, 07:52 AM
Hi There. Actually Rob doesn't have seizures but we both have TN and CNS involvement. Steve is always so wonderful about pointing people in the right direction.

I am so sorry to hear about the seizures. Yes, they can be related to the Lupus. SLE can affect any part of the body and any organ. When the brain becomes involved it is called CNS involvement. This is the most serious form of Lupus. In situations like Alan's it is great that he is in the hospital because usually large doses of steroids are used to get it under control when in situation like he is in now. Once they get them under control they will modify the steroids, anti seizure meds and whatever other medicines he needs to keep these under control or at least for him to get them to slow down. I am going to post a link to a page on the Lupus Foundations information on CNS. I am not going to post it in this note because there are several pages that you need to read.

I really hope that this helps you and feel free to ask me questions if I didn't cover what you needed

http://www.lupus.org/webmodules/webarticlesnet/templates/new_donate.aspx?articleid=102&zoneid=6

Peridot20_Gem
06-13-2011, 11:31 AM
Hello Mary,

I'm so sorry to hear about Alan having seizures now, it is alot of worry but he's in the best place. Here in the UK to stop the seizure's straight away it's is a large valium shot.

Mary i have two forms of seizure's, they started showing slightly at 14 then when i was 18 the two forms showed and i used to have over 18 seizure's a day, i lived in hospital at the time more than home.
Then 3yrs back they diagnosed me with Lupus and had all my history and i was told i was born with it and the seizures besides other things where all linked to Lupus.

They'll keep Alan in hospital and monitor him and also run tests to see what form of epilepsy he as because there's 135 different types, some can be mild and others more progressive while fitting.

I really hope you all the best and Alan and please keep we updated on his progress please.

~Hugs & Kisses~ Terri xxxx

tgal
06-13-2011, 12:11 PM
Terrie,

I did not know that your seizures were Lupus related or I would have mentioned you in my post. I thought your seizures were an illness on top of the Lupus. Sorry about that

One of the reasons they use steroids with CNS involvement in Lupus is that, just like the other related Lupus illnesses, inflammation is the problem. One of the reasons that they can't catch my seizures on the EEG is because I have to be connected with the lack of blood flow happens and I haven't been in the hospital during one. I try to get there as quickly as possible and they have been able to witness and acknowledge that they are seizures (I also have 2 kinds) but they can't get in on the graph because it is going away by the time I get to the hospital.

Alan is in the best place, I agree. I am sure they will get it all worked out!

Peridot20_Gem
06-13-2011, 03:14 PM
Hi Mari,

Well you know i had them at 18 and now but when i saw the rheumo he told me the seizures, strokes etc what i've had was from the Lupus because nobody on either side of my parent's family have them or my cousins.

Mari mine gave off reading's while in hospital but it only showed the one the grandmal, so as time went on they could'nt be controlled and they sent me to the brain surgeon he did an EEG on me while awake, it came back blank so he made another appointment for me to keep awake all night and go there and sleep through the EEG he found what he wanted the grand mal and temporal-lobe, he said your head fires like mad while sleeping but not awake.

It's a shame they can't catch you in time to find out what you do actually have with your two lots of seizure's.

They'll keep monitoring Alan to find out, they'll do EEG's and an MRI scan i'll be surprised if they don't but it's a shame for Mary also she sounds so worried and petrified, you have to feel for her besides Alan.

tgal
06-13-2011, 04:17 PM
No they won't keep monitoring. They want to do the overnight one but I have no insurance and I can't afford it. I have the tonic clonic (used to be called grand mal) and I have absence seizures. Mine did not begin until late 2009 after the Lupus starting taking firm control. I did finally get the disability due to the seizures but I have to wait until Oct 2012 before I have any insurance.

Just waiting now

Peridot20_Gem
06-13-2011, 05:04 PM
Mari,

I'm sorry about the money so they can't keep monitoring you such a shame, it's like being in the wilderness only knowing half of what's going on.
The tonic clonic is hardly used here, it's always grand mal i hate it when that happens i can wet myself or froth at the mouth and the other one is rare simular behaviour to a schizophrenic plus you go in trances.
Mine started in 1984 but showed their true colours in 1986 and you will get disability for seizures, i did'nt though mine happened when i had the strokes for 4yrs and they thought i would'nt walk again, mind you i ah fare off it again now the way i am.

Well i hope your insurance comes through Mari, i really do for you and ain't that the usual thing the WAITING GAME

steve.b
06-13-2011, 06:34 PM
thank you mari for the link.

this information is worth reading by every one.

this information is worth reading by every one.

this information is worth reading by every one.

this information is worth reading by every one.

Gizmo
06-13-2011, 07:54 PM
No they won't keep monitoring. They want to do the overnight one but I have no insurance and I can't afford it. I have the tonic clonic (used to be called grand mal) and I have absence seizures. Mine did not begin until late 2009 after the Lupus starting taking firm control. I did finally get the disability due to the seizures but I have to wait until Oct 2012 before I have any insurance.

Mari, every time you post about not being able to get insurance to cover the care you need I just feel sick to my stomach. Shouldn't you qualify for Medicare or Medicaid right away?

tgal
06-13-2011, 08:10 PM
Mari, every time you post about not being able to get insurance to cover the care you need I just feel sick to my stomach. Shouldn't you qualify for Medicare or Medicaid right away?

ha! You would think so however I can't make more than $150 a month in order to qualify for medicaid in a two family home and I have to be on disability for 2 years before Medicare kicks in. For well over a year I was only getting my child support which is $300 a month and I could not qualify for medicaid because I was $150 over the limit!

Terrie, my seizures actually started out as night seizures. For the longest I didn't know what was happening I would wake up in the morning simply humiliated because I was a 40 year old woman and I had wet my bed! I didn't even mention it to my doctors for a long time. I started buying nighttime pads and cry every morning that it happened. On my first appointment with the neurologist (after my first tonic clonic at work where they called an ambulance) one of the questions on the paperwork asked "uncontrollable bladder release". I started crying right then and there! For the first time I could see a medical reason for this instead of me just being a crazy woman who wets the bed!

tgal
06-13-2011, 08:21 PM
I know this thread is about seizures but I really want to point something out since we are discussing CNS. Although I am not a doctor and I cannot diagnose anyone or tell you what meds you need I think it is REALLY important to make sure that SLE patients take an asprin a day unless told differently by your doctor. One of the things that often happens with SLE patients is that our blood begins change in texture. We don't actually call it thickening but it begins to clot easier which can lead to strokes and all kinds of other health problems. The syndrome is called APS and it is something you can have and not even know it. Looking back on my life (PL - Pre Lupus) I believe I have had APS for decades.

Please take a moment on your next doctor visit to discuss taking an Asprin a day. Do not start it on your own, without doctors approval, but please put this at the top of your list for the next visit. We have enough going on and we don't need clots/strokes that can be avoided

tgal
06-13-2011, 08:22 PM
thank you mari for the link.

this information is worth reading by every one.

this information is worth reading by every one.

this information is worth reading by every one.

this information is worth reading by every one.

LOL You made me chuckle with this

Gizmo
06-13-2011, 09:17 PM
ha! You would think so however I can't make more than $150 a month in order to qualify for medicaid in a two family home and I have to be on disability for 2 years before Medicare kicks in. For well over a year I was only getting my child support which is $300 a month and I could not qualify for medicaid because I was $150 over the limit!

Terrie, my seizures actually started out as night seizures. For the longest I didn't know what was happening I would wake up in the morning simply humiliated because I was a 40 year old woman and I had wet my bed! I didn't even mention it to my doctors for a long time. I started buying nighttime pads and cry every morning that it happened. On my first appointment with the neurologist (after my first tonic clonic at work where they called an ambulance) one of the questions on the paperwork asked "uncontrollable bladder release". I started crying right then and there! For the first time I could see a medical reason for this instead of me just being a crazy woman who wets the bed!

How do you live on $300 a month?!? That's just crazy. The whole system is so messed up.

My daughter has the same problem at night. Did they actually "catch" you having a seizure at night or did they diagnose it based on your history? Her EEG was normal, but she didn't fall asleep during the test. She has other neuro problems, so it's hard to sort things out.

tgal
06-13-2011, 10:00 PM
We lived on $300 a months for close to a year. Let me tell you... you figure out the difference between what you want and what you need really fast!

As for the seizures, I had the 30 min awake one while i had insurance and they didn't catch anything. I was sent home with one attached to my head for 3 days. Sadly, I had a seizure in the chair as they were hooking me up but while they actually had it turned on! LOL For a long time I worried about why they were not finding anything and FINALLY a wonderful ER Dr said to me "Of course they are not seeing them on a regular EEG. Many Lupus patients do not have the typical seizures, meaning an electrical problem. Lupus patients often have problems because of inflammation and when things get inflamed it slows the blood flow to whatever part of the brain and then they have a seizure. By the time help arrives or they get to a hospital it is over." It made complete sense! It also helped explain why, on my MRI, they spoke of a blood flow issue at the base of my brain (left side).

So to answer your question, No, they never actually got it on record. Between witnesses and other types of testing (and the fact that seizure meds worked) I am diagnosed with having Lupus with seizures and a whole other list of things. I can't speak for anyone else but for me the seizures are simply a part of the bigger picture which is CNS involvement. I have 2 neurophych exams and my IQ went down on each. I won't begin to give all the examples of the CNS and it took me forever to find a doctor that would look at me and say "Of course the seizures are from the Lupus!" when everyone else said "oh these are two separate issues". I know it is difficult but keep pushing forward and standing up for what you know is going on. You are the only advocate you have for yourself and for your daughter!

Peridot20_Gem
06-14-2011, 04:14 AM
I know this thread is about seizures but I really want to point something out since we are discussing CNS. Although I am not a doctor and I cannot diagnose anyone or tell you what meds you need I think it is REALLY important to make sure that SLE patients take an asprin a day unless told differently by your doctor. One of the things that often happens with SLE patients is that our blood begins change in texture. We don't actually call it thickening but it begins to clot easier which can lead to strokes and all kinds of other health problems. The syndrome is called APS and it is something you can have and not even know it. Looking back on my life (PL - Pre Lupus) I believe I have had APS for decades.

Please take a moment on your next doctor visit to discuss taking an Asprin a day. Do not start it on your own, without doctors approval, but please put this at the top of your list for the next visit. We have enough going on and we don't need clots/strokes that can be avoided
Mari,

How you said the seizures and wetting yourself made you cry, all that came out of my mouth as i still living with my parent's when it started was sorry and the full embarressment was unbelieveable until i saw the doctor and he said yes this occurs, it's when the fits are to much and by wetting apparentley with grandmal is also a relief with the seizures and when you froth there's the worry of choking, those seizures alone have put me in 3 coma's, they can be very dangerous.

I did'nt want the Asprin but the rheumo said you've got to take it because of the clotting and strokes and i don't feel no different taking it but i do recommend to other's like Mari's said it's best to add it to the list to see your doctor about.

I've had DVT bad and it's no fun the pain is terrible and then there's the left over scaring and damage the clots do and then i had two major strokes where i was completley paralised took my speech the lot and it took 4yrs to get me walking again and to all member's out there who have had them or have'nt, listen to Mari's advice because once a major stroke happens you've lost you independance to life and rely on other's and then your lying there hoping a miracle will bring your body back in some way of living a normal way of life again but without the help of others.

((Hugs to you all)) xxxx

MaryS42
06-14-2011, 09:34 AM
Hi All first of all thankyou all so much for all the support and information it has been very useful.Update on Alan is no-one at the hospital think the seizures are Lupus related they did a CT scan and it was "clear" he is to have an MRI scan but not till friday 3 more days away(shocking) .He has had just over 40 seizures since midnight on Sunday this is now 5.30pm Tues he is exhausted (so am I) ive been "sleeping" on a chair at his bedside now for 2 nights im exhausted also but I cant leave him he breaks his heart crying everytime he has one he's terrified and so am I as they are so violent.The doctors have also said no way is this epilepsy as he is fully conscious during them and the CT scan would've shown if it had of been Epilepsy he was already on 40mg prednisolone so they are giving him Diazipam straight into the vein it doesnt stop the seizures but they arn't quite as violent as they've been.Love to all and thanks once again M.x.

Peridot20_Gem
06-14-2011, 11:33 AM
Mary before i reply to your messages read this info because i have Temporal-lobe epilepsy which sends me in Autissum seizures but i'm still awake but in a trance and i also suffer with Todds-paralasis, there are seizure's where your still awake having one.

Conscious Seizures

Partial seizures involve epileptic activity in just a part of the brain. They can be divided into simple partial and complex partial. In a simple partial seizure you are fully conscious. You remain fully aware of your surroundings. However this does not mean that you are able to stop or control the symptoms.

In a complex partial seizure you partly lose consciousness and you are not aware of what you are doing. Because of this, you may not remember the seizure afterwards, or your memory of it will be unclear.

The symptoms that you experience depend on which area of your brain is affected by epileptic activity.

The areas of the brain
The temporal lobes – responsible for many functions, including hearing, speech, smell, memory and emotions
The frontal lobes – responsible for many functions, including movement, emotions, memory, language, social behaviour and sexual behaviour. They are also considered to be home to our personality.
The parietal lobes – deal with our bodily sensations.
The occipital lobes – responsible for our vision and how we see things.
Follow these links for more detailed information about different types of partial seizure.

Temporal lobe seizures
Frontal lobe seizures
Parietal seizures
Occipital lobe seizures
Todd’s paralysis or Todd’s paresis
Rarely, following a partial epileptic seizure, it is possible to experience temporary paralysis in the area of the body that was involved in the seizure. This can last from minutes to hours.

tgal
06-14-2011, 11:38 AM
Omg where did these people go to school! I went through all of this and there is so much I want to say but I am away from my computer! Keep us posted and I will write a novel when I get home!

Peridot20_Gem
06-14-2011, 11:47 AM
Hi All first of all thankyou all so much for all the support and information it has been very useful.Update on Alan is no-one at the hospital think the seizures are Lupus related they did a CT scan and it was "clear" he is to have an MRI scan but not till friday 3 more days away(shocking) .He has had just over 40 seizures since midnight on Sunday this is now 5.30pm Tues he is exhausted (so am I) ive been "sleeping" on a chair at his bedside now for 2 nights im exhausted also but I cant leave him he breaks his heart crying everytime he has one he's terrified and so am I as they are so violent.The doctors have also said no way is this epilepsy as he is fully conscious during them and the CT scan would've shown if it had of been Epilepsy he was already on 40mg prednisolone so they are giving him Diazipam straight into the vein it doesnt stop the seizures but they arn't quite as violent as they've been.Love to all and thanks once again M.x.Hi Mary,

Thanks so much for getting back to us and letting we know how things are going with Alan and 40 seizures is such alot within a short time.
Being that they've found nothing with the CT scan then the MRI should show something but if not they should run two EEG tests, one while he's awake and one where he's sleeping it shows how attactive the currents of electricity in the brain are.
Mary this lot will shock Alan it did me for years plus the seizures do put alot of stress onto the body in general. They've got him on Valium to carm the nervous system down and he'll be slightly tied with how they're feeding him with the valium, as it gives small dosages at a time.

If they don't find nothing with the tests you've mentioned and also what i mentioned and they can't find nothing, this is a suggestion you don't have to follow it but you could ask either the specialist who's treating him or your GP to send him to (MR Tim Betts at the Queen Elizabeth, Birmingham) he's one of the top 6 surgeon's in the UK for epilepsy, he's a brilliant man.

I wish Alan and yourself the very best, as you must be totally worn out yourself.

~Hugs & Kisses to you both~ xxxxxx

Peridot20_Gem
06-14-2011, 02:33 PM
Hello Mary,

Hows Alan now and are you coping ok besides being worn out?? xxx

Gizmo
06-14-2011, 05:05 PM
Hi All first of all thankyou all so much for all the support and information it has been very useful.Update on Alan is no-one at the hospital think the seizures are Lupus related they did a CT scan and it was "clear" he is to have an MRI scan but not till friday 3 more days away(shocking) .He has had just over 40 seizures since midnight on Sunday this is now 5.30pm Tues he is exhausted (so am I) ive been "sleeping" on a chair at his bedside now for 2 nights im exhausted also but I cant leave him he breaks his heart crying everytime he has one he's terrified and so am I as they are so violent.The doctors have also said no way is this epilepsy as he is fully conscious during them and the CT scan would've shown if it had of been Epilepsy he was already on 40mg prednisolone so they are giving him Diazipam straight into the vein it doesnt stop the seizures but they arn't quite as violent as they've been.Love to all and thanks once again M.x.

Mary, I cannot imagine what you are going through. My thoughts and prayers go to you and Alan. I'll even include the idiotic doctors in hopes that they will figure out how to help Alan.

steve.b
06-15-2011, 02:17 AM
thinking of you and alan.

lovedbyHim
06-15-2011, 11:16 AM
wow, I have tried to keep up with reading the various threads but it is hard as I have to use my droid to read them at home. I'm so sorry mary for what you are going through. I raised a boy with special needs and the suffering he endured nearly broke me. Bless you dear woman.

Thank you everyone for teaching me so much. I wonder how you have endured so much and are all on here to encourage me just when I am nauseated.

Mari, I am sickened by your medical system of care. We have more here in PA. I wish you were here and if they did not help you, I would fight for you! Thank you for all you do to help us here!

MaryS42
06-15-2011, 02:24 PM
Hi All once again a huge big thankyou to you all for all the wonderful help support and information you have given me since joining you have no idea how much this has helped us but i have to say a huge thankyou to Tgal the link you sent me i printed out and marched into the hospital today and demanded that all these "idiot" consultants read it and at least consider the possibility that it could be CNS and finally I got one of the doctors to consider and start treatment for CNS seizures and what happened at 3.10pm today Alan had his last seizure (68) since midnight on sunday we are keeping our fingers crossed that he has no more and they get to the bottom of it all.The doctor that listened and started the CNS treatment also said that the CT scan showed 2 abnormalities on the back right and left side of the brain however it is still not clear what the cause is and the MRI should give a better picture yet one of the consultants said the CT scan was clear(Idiot)!!!! Anyway we are now thankfully on the right road.Hope you are all well take care Mary.x.

Peridot20_Gem
06-15-2011, 02:46 PM
Hello Mary,
That's what we're all here for to love and support one another through stressful times.

I am pleased you marched into the hospital and showed them Mari's link, good on you mary, that's what i love to hear and especially now they'll be treating Alan and i'm touching wood for you that his 68 seizure's are the end of it mainly for Alan but to make less worry for you also.
They should still run furthur tests to see what those abnormalities are as they're most likely the cause of all this.

At least somethings happening now but i do feel sorry for the stress his body as gone through to show something and by you sorting them out, which they need sometimes but now i do hope Alan picks up and you can get some good sleep.

Thanks for updating we mary it's s appreciated when a member is ill.

Love to you both and all my wishes to Alan. xxxx

steve.b
06-16-2011, 04:38 AM
i am glad alan is on the right road now.

again i suggest everyone read maris link, there is information there that we all need to know.

Linda From Australia
06-16-2011, 07:22 AM
I am so please for you and Alan. Let's hope the road to recovery is smooth

tgal
06-16-2011, 08:53 AM
Awesome news!

Peridot20_Gem
06-16-2011, 11:24 AM
Hello Mary,

Hows Alan been today, as he had anymore seizures? and are you doing ok in yourself because it's such alot of stress and worry and what Alan going through won't help him one bit.

Kisses to you both Terry xxxx

MaryS42
06-16-2011, 02:08 PM
Hi Terry he had 3 relatively small ones today certainly not as violent as they have been unfortunately he can't have an MRI scan as he had a stent fitted in his heart after his motorcycle accident so it is too dangerous to do it,however we have 2 neurologists coming from Southern General Hospital Glasgow on Monday or Tuesday the unit there is the top unit in great britain for brain injuries so they are coming over to see what other tests can be performed other than MRI however they said they may have to transfer him over to that hospital as they have all the specialised equipment in the unit and are probably the better people to deal with this situation.He was very emotional today(crying like a baby) saying he's frightened he's going to die etc only natural after everything he has been through I suppose. Thanks for all the support Love Mary.x.

Peridot20_Gem
06-16-2011, 02:57 PM
Hello Mary,

Although none would have be good news, 3's not so bad it they was small ones plus less pressure on Alan and although they can't do the MRI Scan because of the stent at least you've got top surgeon's coming in now that is good news.
Well i told you in the UK besides Mr Betts there's only 5 other top surgeon's who deal with epilepsy and these could be the ones also and i hope good news follows after their visit and transfer to their hospital.

Mary he will cry, wheather your young or older when these first start it's a major shock to the system for anyone and even those close watching because i won't know if Alan's feeling the same but when i have a seizure mine internally bruise me and i suffer very bad cramping afterwards and i always know when i've had one. He's under the best care at the moment so he's being watched 24/7 so don't you go taking in what Alan's feeling about going to die, you being there and family will keep him fighting and you'll be surprised.

I wish him the the very best and i really do after what he's gone through with the seizure's plus previous but there is another concern here, you keep well and rest also because he'll need your strength for full love and support and you need to keep healthy yourself besides Alan.

Do takecare and all my love Terry xxxxx

tgal
06-16-2011, 03:57 PM
Hi All once again a huge big thankyou to you all for all the wonderful help support and information you have given me since joining you have no idea how much this has helped us but i have to say a huge thankyou to Tgal the link you sent me i printed out and marched into the hospital today and demanded that all these "idiot" consultants read it and at least consider the possibility that it could be CNS and finally I got one of the doctors to consider and start treatment for CNS seizures and what happened at 3.10pm today Alan had his last seizure (68) since midnight on sunday we are keeping our fingers crossed that he has no more and they get to the bottom of it all.The doctor that listened and started the CNS treatment also said that the CT scan showed 2 abnormalities on the back right and left side of the brain however it is still not clear what the cause is and the MRI should give a better picture yet one of the consultants said the CT scan was clear(Idiot)!!!! Anyway we are now thankfully on the right road.Hope you are all well take care Mary.x.

Hi Mary! Now that I am back home and not posting from my phone I just wanted to say GOOD JOB! You did exactly what you should have done! I wish everyone was as lucky as Alan and have someone fighting for him like you are! I am so glad that they decided to finally listen a little! I read further and saw another seizure but it can take time to get them under control. At least you are starting to see light at the end of the tunnel. After 2 1/2 years I still don't have my seizures under control but they are much less frequent then before. Who knew someone could be so happy to say "I only have them once a month or so (not counting night seizures but those are different)". They just have to find the right cocktail of meds and with you at his side I have no doubt they are well on their way.

As to one of the idiots with the scan... LOL I had my first results on my MRI come back saying all clear and when I went to another doctor and he compared the two he said "yes, I see what could be some dymylenating on the first MRI and it has increased on the second". What? You saw something on the first but they guy that read it said it was "all clear"?

Just do what you are dying Mary. Alan couldn't ask for more!

Peridot20_Gem
06-16-2011, 04:07 PM
Mari,

I'm just glad mary went in with guns blazing and now Alan will be going under the best people to help him in his situation, which will help Mary in so many ways, knowing he's being treated by the best.

MaryS42
06-17-2011, 03:55 AM
Sorry everyone just have to let loose today cant stop crying its so bloody hard to stay strong all the time so using my time at home to break down so as not to do it in front of Alan when I go up to hospital unfortunately he has had another violent seizure this morning so the doctors are now trying to come up with a cocktail of drugs once again to try and keep them at bay till the neurologists step in next week. I honestly don't know how you all cope not just the Lupus sufferers but also your families there is nothing worse than standing by helpless watching the one you love suffer and be in pain and there is absolutely nothing you can do to help its so frustrating. Ok im calm again just had to vent vent vent !!!!!!! Sorry and thanks to each and everyone of you who have taken the time to help and support us you are all so so special in evry way and I dont think i would've got through this without you all and now truly understand why you refer to yourselves as "FAMILY" love to you all M.x.

steve.b
06-17-2011, 04:39 AM
( ( ( h u g s ) ) )

Peridot20_Gem
06-17-2011, 05:23 AM
Hello Mary,

Vent away mate and i must be honest crying at home away from Alan is the best thing to do because when Alan is stabalized and finally home besides Lupus kicking off with stress, seizures can and Alan seeing you upset can worry him and trigger a seizure, as i've been there so many times myself.

I am sorry he had a violent seizure this morning and really they should'nt be coming up with a cocktail of drugs until they actually know what type of seizure/seizure's is causing it, i've got a good history of over 25yrs with them and i've been on some right cocktails and some meds can make you fit more, instead of giving him small feeds of valium why don't they give him a 40mg injection of valium which is for the nervous system besides seizures, that shot would carm his head for a start off besides sending him to sleep and they could do that on a regular basis until the other doctor's get there. I take 5mg every other day at night to help keep my head carm and within 20mins with 5mg i'm out for the count.

Mary my husband cryed such alot when we got together but in 10yrs now he's alert to when i'm due a fit with my eyes and glazing of the eyes, so in time if Alan's seizures do carry on (i hope to god they don't) but under control you'll learn yourself and see the signs but it is alot ontop of the Lupus because many a day i find that hard to cope with and the pain besides.

Mary please keep we updated after your next visit and if they do put him on drugs get hold of the names and write them down and add them to the thread for me please if possible.

You takecare dear friend and our love and support is with you fully. Hugzzzzzzz you way Terry xxxx

lovedbyHim
06-17-2011, 06:42 AM
Mary my heart is heavy for you. Have a good cry as it does help. As I look back on my sons mental illness and then being hit by a car and brain injury, I can honestly say it is easier for me to suffer with lupus than it was to was to be powerless as my son suffered.

I am so very proud of how you handled the docs and help is on the way. Keep up the good work Mary. It's a privilege to meet you on this forum!

tgal
06-17-2011, 08:23 AM
Hi Mary,

This place is for venting. You are always here to listen and to support each and every one of our family members. I am sure we have all cried and lost it at one time or another (or 30 times or another) and it is very natural. You are being very strong and supportive for Alan and there has to be someone/somewhere for you to go and get support as well. That is why Conrad and Susie created this wonderful place. As hard as it is for those of us with this nasty disease we sometimes forget how difficult it is on those around us.

I hate the fact that he hasn't seen a neuro yet but am glad that they are working on the right cocktail of meds. I know it is frustrating but that is the best they can do. I have what is called Trigeminal Neuralgia and for 3 months I kept having to go to the ER because I had this HORRIBLE pain in my face and no one could figure out what it was. Over and over I ended up screaming with my hands over my face and over and over I would get to the ER and they would want to treat me for a headache! I kept telling them that this isn't a headache but no one would listen. FINALLY I was in the ER and a neurologist was in the ER at the same time I was there. He took one look at me and told them what it was and we started treatment. It took another several weeks to find the right dose that I needed at the time but we eventually did. I am only telling you this so you know that just because it is taking awhile don't give up hope. It may take awhile but they will find the answer and, until then, we are here for you whenever you need us.

A special hug to you during this difficult time

MaryS42
06-17-2011, 12:45 PM
Hi All Alan has had 2 really bad seizures today but they have upped the dose of the drugs they are giving him he is on Phenytoin (anti epilepsy ) drugs the good news is they have ruled out virus and infection as they have all the results from the lumbar puncture so they have dropped the 3 anti-viral and antibiotics he was on so thats a bit of good news for a change (thankgod) and so much for crying at home so as not to worry Alan as soon as I walked in he said "have you been crying" I think the blotchy face and puffy eyes gave me away lol!!! No pulling the woolover his eyes even when he's doped up with drugs. Cant stop thanking you all for the love hugs and support now and always M.x.

Peridot20_Gem
06-17-2011, 01:36 PM
Hello Mary,

Well i'm sorry to hear Alan's had another 2 bad seizures again and the Phenytoin they're giving him i was on them in my early 20's and they was affecting my skin bad i'm now taking Tegretol Retard but was just taking Tegretol before they altered them besides other mixture's i'm on, i do hope they work for Alan till those specialist's can see him, if they're giving it tablet form he won't feel the affect for at least 3-4 days it's according to the dosage they've given.

Now that is great news about no infections, i bet that's pleased you to bit's, when you see Alan is he able to talk much to you Mary because seizure's can really daze some people as i'm one of those who's out of it for ages afterwards.

Oh bless him mary, even though he's bad dow worry your on his mind when he's round because he knows your worrying the same.

I give you both all my love and i'll add info below on the Phenytoin so you know what the drugs about, as you need to know while Alan's being treated and also the link to the site.

Love Terry xxxxxxxxxx

Peridot20_Gem
06-17-2011, 01:41 PM
GENERIC NAME: phenytoin

BRAND NAME: Dilantin

DRUG CLASS AND MECHANISM: Phenytoin is an oral and injectable anti-seizure medication first synthesized in 1908. Phenytoin was originally approved by the FDA in 1939.

PRESCRIPTION: yes

GENERIC AVAILABLE: yes, but not recommended.

PREPARATIONS: Tablets (triangular; yellow), 50mg; capsules (white with colored band): 30mg (pink band); 100mg (red band). It also is available as a suspension (125mg per 5mL).

STORAGE: Tablets, capsules, and suspension should be kept at room temperature, 15-30C (59-86F).

PRESCRIBED FOR: Although it has been used in many conditions, phenytoin's only approved use is as an anti-seizure medication (anticonvulsant), especially to prevent tonic-clonic (grand mal) seizures and complex partial seizures (psychomotor seizures). It may be used alone or with phenobarbital or other anticonvulsants.

DOSING: The dosing of phenytoin is very patient- specific. It may be given once, twice, or three times daily. Doses are often adjusted to find the optimal dose, based on measurement of blood levels. Taking phenytoin with food may reduce some of the side effects. Elderly patients, debilitated persons, and patients with certain kidney or liver diseases may need lower doses. The suspension should not be given at the same time as tube feedings.

DRUG INTERACTIONS: There are many potential drug interactions with phenytoin. Phenytoin can increase the metabolism (elimination) of many drugs, reducing their concentrations in the body. Drugs that may be affected include: digoxin, carbamazepine, clonazepam, corticosteroids (e.g. prednisone), cyclosporine, disopyramide, doxycycline, estrogens, felodipine, levodopa, lidocaine, methadone, mexiletine, oral contraceptives, paroxetine, quinidine, tacrolimus, theophylline, phenobarbital, and warfarin. Phenytoin can interact with these drugs not only when it is added to therapy but also when it is discontinued. In the latter case, the concentration of the other drugs may increase.

Phenytoin's metabolism may be affected by other drugs. Drugs that can reduce the amount of phenytoin in the body include rifampin and phenobarbital. Drugs that increase phenytoin concentrations include amiodarone, chloramphenicol, cimetidine, disulfiram, fluconazole, fluoxetine, isoniazid (INH), omeprazole, and paroxetine. Thus, measuring levels of phenytoin in the blood may be necessary when patients begin or discontinue other medications.

The oral absorption of phenytoin can be reduced by any of the following: antacids containing magnesium, calcium carbonate, or aluminum; calcium salts; or enteral feeding products (tube feedings). Separating the administration of phenytoin and enteral feeding products, antacids, or calcium salts by at least 2 hours will help avoid this interaction.

www.medicinenet.com › ... › neurology az list › phenytoin index

Peridot20_Gem
06-17-2011, 03:07 PM
Mary,

Let we know how Alan is tomorrow please. xxx

MaryS42
06-18-2011, 09:43 AM
Hi All Alan still having seizures even though they have increased the dose of the phenytoin however these ones are isolated to his head only head shakes but not violently but the strange thing is his eyes go glazed and his eyelids flutter uncontrolably for about 15 to 20 mins this is a new one?????? Love M.x.

Peridot20_Gem
06-18-2011, 10:13 AM
Hi Mary,

When i was on Phenytoin the drug alone was'nt enough i was on a right cocktail but like i said they took me off them.

Mary i'll just be glad when those specialist's get to Alan, i've just searched on what you've told me and if it's correct he may be on the wrong meds, i hope your able to print these off to show the doctor's he's with and you'll see that Keppra and frisium help it... well that's another combination of drugs i'm on also.

I'm attaching the links for you to read as the condition sounds like it maybe (Myoclonia) because it's a rare condition and thank you so much for letting us know.

www.ilae-epilepsy.org/ctf/eyelid_myoclonia_w_wo_abs.html

www.epilepsy.org.uk/info/.../eyelid-myoclonia-with-absences-ema Mary on this Link type in the search section on the right Myoclonia and then another page will come up read the one at the top with the heading - Eyelid myoclonia with absences (EMA)

Love Terry xxxx

lovedbyHim
06-18-2011, 10:15 AM
Bless you Dear woman (((hugs))).

Peridot20_Gem
06-18-2011, 10:58 AM
Mary,

When you speak to the specialist's themselves mention his Lupus, as Seizure's can come on out the blue or be Lupus related which mine are and if Alan does have that which i've stated it's an Autoimmune Disorder which can be linked with Lupus.

Peridot20_Gem
06-18-2011, 05:08 PM
Mary, i know i've said this since you've done the thread but me having epilepsy for so long, i hate hearing it when another person may be developing it also but please keep we all updated...as it is nice to know how Alan's going.

You get some good rest yourself and try not to get to stressed, i know it's easy to say but less stress on yourself the more you can handle.

Hugs Terry xxx

Linda From Australia
06-18-2011, 11:08 PM
Mary how is Allan feeling throughout all this? I know beforehand he was feeling miserable. Are you able to get a psychologist or even a social worker to spend some time with him to help him to come to terms what is happening with him at the moment.

MaryS42
06-19-2011, 02:43 AM
Thanks Terry I will keep you all posted on any developments, Linda Alan was already under the care of a fantastic psycologist called Ewan he is wonderful and actually had sessions with Alan and I as a couple then on a one to one basis with each of us unfortunately he's on holiday this week but he's coming up to hospital to see Alan when he gets back and I think that will do Alan good I would say we've had mixed emotions he goes from saying he's going to fight this to he wants to get his affairs in order to organising his funeral its such a shame to hear him talk like this but I have to let him get it all out I think this has frightened him beyond anything else he's ever had to face and the fear of the unknown is a terrible thing for him and also myself to deal with but we'll get through it we always do .xxx Love & hugs to all M.x.

Peridot20_Gem
06-19-2011, 03:04 AM
Hello Mary,

Seeing his psycologist will do him the world of good especially if he's built a bond between he/she and he'll most likely pour out his emotions which will do him good.

I've been where Alan is wanting to sort your life out then wanting to die and at the end of the day i'm still here fighting, not to good with the Lupus i will admit but i have my hubby to consider who's very close to me, so it's just carrying on in life and handling what hits you.

It will take Alan awhile refering the Lupus and seizure's but he will get his head around it with good help/support and love off yourself.

Love Terry xxx

Peridot20_Gem
06-19-2011, 05:51 PM
Hi Mary,

When you have time can you update we please on Alan..i just hope he's not been to bad today and your ok besides.

Have they actually said what they think it is from yesterday and have they given you a proper date out of tomorrow or tuesday when the other top specialist's move in on Alan and hopefully he'll be sorted out more quickly to ease the pressure he's under besides yourself.

All my love Terry xxxxx

MaryS42
06-20-2011, 03:56 AM
Hi Terry neurologists are coming tomorrow no specific time yet but but based on the lumbar puncture results they said it isn't CNS Vasculitus they said high dose steroids can cause seizures,they said Mycophenolate can cause seizures and lastly because he has a stent in his heart (from his accident ) they said his stent can cause seizures but all in they have no clue as to whats causing them so we are pinning all hopes on neurologists having an answer will keep you informed when I hear anything else.Thankyou so much for all your love and support i have enjoyed our chats thanks Mary.x.

Peridot20_Gem
06-20-2011, 08:08 AM
Hello Mary,

Thanks for getting back and letting us know besides myself.

Well if they've said 3 things can cause it, they don't really know it's best to leave it to the top specialists now as they'll do extensive tests to find out the proper cause. I hope Alan's ok besides yourself also and get plenty of rest.

When i started having seizure's my dad worried that much he lost a stone and half in a week, yet it never had the same affect on my mom, i surpose it's according to the person in general.

As soon as you know something with the other specialist's please get back when you can and let we know, i hope you don't think i'm pestering you but seizures are so serious and with what Alan's gone through i just hope it's down to nothing to bad.

All my love to you both Terry xxxxxxxx

tgal
06-20-2011, 08:19 AM
Just letting you know that I am thinking of both of you. I haven't been posting much but I have been reading. You are in my thoughts

MaryS42
06-21-2011, 02:37 PM
Hi All not much to tell really neurologist came to see us today she doesn't think its epilepsy however she said she wont have any answers till they have done the EEG tomorrow.They have taken him off the diazepam and are going to try and induce a seizure while he is having the EEG as apparently this will give them the best picture of whats going on so its all a matter of waiting now till tomorrow will keep you all posted with results etc as and when we get them.Hope you are all well love M.x.

Peridot20_Gem
06-21-2011, 02:56 PM
Hello Mary,

It's still nice to let we know how Alan's going although there's not much to report and i thank you for that...yes he needs to be on nothing really to take a good EEG because like i mentioned Diazipam (Valium) shuts down the electricity in the cells, as i'll be having one before i go to bed as they help keep my mind stable with the seizures and if Alan was on them they'd get no proper readings showing.
I do hope they do two EEG's one while he's sleeping and one awake because the activity of his brain can work either way if they are seizures.

Both of you takecare and all my dearest love to you both Terry xxxxxx

P.S I'll wait for you to update we again and a large thanks again.

MaryS42
06-22-2011, 08:45 AM
Hi Terry and everyone else im afraid i dont really have very much news Alan had an induced seizure while having an EEG today and although we havn't had a formal diagnosis the neurologist who performed the test said its definately not epilepsy and she thinks its simply stress brought on by the Lupus diagnosis.NOT HAPPY WITH THAT CONCLUSION!!!!!!!! This is more than stress believe me because if its just stress I should be having seizures, strokes or a heart attack lol!!!!! no-one is more stressed than me right now with the frustration of doctors being so closed minded that they won't even contemplate Lupus . Ok RANT over for another while hope everyone is keeping well and will continue to update on how we are doing.Love to all M.x.

Peridot20_Gem
06-22-2011, 10:58 AM
Hello Mary,

As soon as i sign in after my tea i always look first to see how Alan's going and if you've replyed.

Mary mind my language but stress my a.se and if i was his wife like yourself and by what you've said he's gone through i would'nt be happy with the conclusion also. Everything you've said about stress causes what you've said...if i get stressed out i fit and by the discription of what you've seen with Alan they're seizures and these are surposed to be top specialist's dealing with him.
They should be contemplating Lupus because for a start off mine started at 18 and i thought they'd came out the blue and then to be told 3yrs back the lupus had caused them being born with it.

Mary just one EEG won't find nothing and they do have more tests besides that, unless they just want a quick option out and what then put Alan on wrong meds hoping the best will do, this just ain't on.

I hope your keeping fine besides stress which you will get with worry because they're playing GOD with your hubby's life.

I'm the same as ususal mary the same aches and pains that go with Lupus but life goes on.

Love to you both and please keep letting us know. Terry xxxx

MaryS42
06-22-2011, 01:37 PM
Hi Terry first of all I can't thank you enough you have been my pillar of strength honestly if it wasn't for our chats on here I'd be going stir crazy by now.I am absolutely livid by the whole "STRESS" diagnosis no human can thrash about the way Alan has been doing and come up with "stress" but because of this they have decided to stop the phenytoin tomorrow and I just know as soon as they stop that he will start having violent seizures again I know its going to happen they stopped his diazepam yesterday and he has been shaking(kind of like watching someone who has parkinsons) so no-one is going to tell me his whole body is shaking constantly due to stress!!!!! Once again I will keep you posted on developments tomorrow I don't know if I've told you this but Alan is 6ft 4inches tall and right now he looks like a frightened little boy and it scares the S**T out of me and him.Thanks once again love & hugs M.x.

tgal
06-22-2011, 03:14 PM
Dr's sometimes need to be slapped! Can you ask for a 2nd opinion? If the meds are helping why in the world would they take him off of them? That is crazy talk!

Peridot20_Gem
06-22-2011, 03:44 PM
Hi Mary,

Thank you so much for your kind words but i know what your going through when you need support, been there in the past and just chatting to someone helps such a great deal.

I'm not a doctor as you know but been through so much in the past plus with different neuro's besides being on wards with people having different seizures to know that what Alan's going through is definitely not stress related, his body and mind will get stressed with what he's having to cope with not the other way round.
Mary, Alan needs fetching off the phenytoin because they're used for seizures i suffer with not what Alan's having and what as carmed him down is'nt the phenytion because it does take quite a few days for them to set into the system, it's the valium (Diazipam) which as lowered him.
It's a drug used by ambulance services and doctor's on quick response to stop seizures straight away and you can get them in suppositorie form for the back passage which they work just as quick as a jab.

I've been looking up on people who don't have seizures but the reaction's are like seizure's and they're called Cluster seizures so i would definitely say to them, may he be suffering with Cluster seizures, those are for people who don't have epilepsey but have seizures in the state of one and see what they have to say about that.
If you keep advancing these question's forward, with some doctor's they do take notice and it's also showing them your trying to understand what's happening and how your seriously worried about this carrying on and not getting controlled.

Alan shaking and looking like someone with parkinsons, they're strong and hitting his nerve system hard, he's gone through alot and they can't afford to be playing guessing games, they should be doing alot more tests, why are'nt they testing his nerves with electric rodes for a start off to see if there's damage concerning his body.

Mary i'm sorry but going through years of it and coma's and hearing this, which as extended for days and they're no where near a diagnosis it makes my blood bile.

You've just mentioned is height and looking like a frightened boy besides hospital food try and get him to eat extra because if they carry on like they have been doing, they'll ware him out and he needs to hold body weight to take the strength of the seizures.

If he does know your telling me and other member's tell him from me to hold on tight and fight it well as i really know what he's going through.

I'll wait to hear from you mary and thanks again for updating we.

My thoughts are with you both and all my dearest love to you mary xxxxxxxxxxx

tgal
06-22-2011, 04:09 PM
I am not sure what "fetching off" means but if it means "taken off" then I am not sure that I agree (thus why we state that we are not doctors). I am currently on 2 seizures meds even though they were not able to see mine on EEG. I am on them because they work. Alan needs a doctor that is willing to step off the main path and do what works not what the books say work.

Keep us posted Mary. We are keeping our fingers crossed.

(this happens when we have so many countries speaking!)

Peridot20_Gem
06-23-2011, 01:28 AM
Mari,

"Fetched off" in our black country accent means "taken off" as so many members know.

You may be on meds that suite you even though nothing was found on your EEG as you've stated and they put me on medication years back for mine which was'nt the right ones and i'm not half brain damaged due to my own fault, it was due to neuro's and psychiatrists playing God with medication that put me this way and furthur running of tests by the Neuro surgeon he found the proper diagnosis for me and meds.

Wrong medication can do more harm to the brain than anything else and Alan can do without that.

Your correct Alan needs a second opinion and more tests running before they jump in to quick with meds as he's been through Alot.

MaryS42
06-23-2011, 04:03 AM
Hi All well todays news is as far as hospital doctors are concerned the Lupus is "under control" his kidney function is "best its been sitting at 39%" function its definately not epilepsy they are dropping the steroids from 40mg to 20mg he is no longer to take Mycophenolate(cellcept) they are now going to try cyclophosamide(chemo) they are now saying we shouldn't use the word "seizures" as they don't think it is seizures they are going to half the phenytoin dose then stop it all together !!!!! Then when they've done all this in my opinion "GOD HELP HIM!!!!!!) They are playing with my mans life and I don't like it one bloody bit this is Thursday they said he'll be home out the hospital on Monday!!!!!!!! Will keep you all posted on developments!!!! Love to all M.x.

lovedbyHim
06-23-2011, 04:35 AM
Hi Mary, I have no words of advice, just a great big prayer lifted up for you and your husband. Please keep us posted.

Peridot20_Gem
06-23-2011, 05:03 AM
Hello Mary,

Thanks for such a quick reply today. Well if they say is Lupus is under cntrol that's one good piece of news and also about his kidney function.
Fare enough he does'nt have fits refering (Seizures) as they don't like it being used god knows why because that's what they're called.

I'll be looking up why they're trying chemo for and also the name but in general i'm pleased if they think he does'nt need Phenytoin and i'll refer to that drug later.

Mary PrintCyclophosphamide (Cytoxan) is a suppressent for the immune system, i'll add info below and a link so you know what it's being used for concerning your hubby.

I'll get back to you Mary on this because it's taking such a while to sort Alan and i can tell it's eating at you with what you've saw and how the treatments been dealt with.

All my love Terry xxxx

Peridot20_Gem
06-23-2011, 05:19 AM
Cyclophosphamide (Cytoxan)

Cyclophosphamide (Cytoxan) belongs to a class of drugs known as alkylating agents, which have been used to treat some types of cancer. It is also considered an immunosuppressant—a medicine that can decrease the immune response.

Fast Facts
Cyclophosphamide is reserved for severe, refractory rheumatoid arthritis or severe complications of lupus, myositis or vasculitis.
Cyclophosphamide can be associated with serious side effects and requires careful monitoring by your physician.
Uses
Conditions treated with cyclophosphamide include lupus; systemic sclerosis (scleroderma); some forms of vasculitis; myopathies such as polymyositis and dermatomyositis; and, sometimes, rheumatoid arthritis.

Cyclophosphamide is used for severe complications of rheumatoid arthritis, such as blood vessel inflammation (known as vasculitis). In lupus, it is given for serious kidney problems or other organ-threatening complications. Although cyclophosphamide has allowed people with some of the diseases listed to live longer, this medication can cause serious side effects. Careful monitoring is needed for this medicine.

How it works
Cyclophosphamide blocks the production of the deoxyribonucleic acid (DNA) in cells. This prevents cells from dividing, leading to cell death. Some of the cells affected by this medication are immune cells. These play a key role in autoimmune diseases such as rheumatoid arthritis, lupus, scleroderma or vasculitis.

Dosing
The dosing of cyclophosphamide varies from person to person and depends on the disease being treated. For the form taken by mouth, a usual dose is 1.5 to 2.5 milligrams (mg) per kilogram (kg) of body weight per day. This medication also is given in an intravenous (IV) form in the doctor's office or hospital. For example, cyclophosphamide is sometimes given as a monthly infusion for the treatment of lupus kidney disease.

Time to effect
It may take several weeks for symptoms to improve, and the full effect may take several months or longer.

Side effects
Common side effects, which may be worse with the pills, include nausea and vomiting. These symptoms usually can be controlled with anti-nausea medications. Hair loss can occur, but hair usually will grow back when the medication is stopped. Other common side effects include skin rashes. Cyclophosphamide increases the risk of developing some kinds of infections, especially herpes zoster, often referred to as “shingles.” Unusual infections can occur with cyclophosphamide use.

Other important side effects include:
Blood cells: Cyclophosphamide can have significant effects on the blood cells, typically causing a reduced number of white blood cells, a key component of the body's immune system. This can occur 8-12 days after starting treatment. Your doctor will check your blood counts around this time and make dose adjustments as needed.

Fertility problems: Cyclophosphamide can cause infertility in both men and women. This often is seen in older patients or those taking higher doses for long periods of time. Discuss this issue with your doctor before taking cyclophosphamide. Although women taking cyclophosphamide can stop having periods, they can still become pregnant so an effective form of birth control to prevent pregnancy should be used while taking this medication. Taking cyclophosphamide during pregnancy is very dangerous to an unborn child.

Bladder problems: Cyclophosphamide is broken down in the body into several other products. One byproduct known as acrolein can cause an irritation of the bladder, or “cystitis,” which may result in blood in the urine or scarring of the bladder. Patients taking oral cyclophosphamide should drink plenty of fluids each day to help prevent problems. Patients receiving intravenous therapy are sometimes given a medication called mesna (Mesnex) to help prevent bladder problems.

Cancers: Cyclophosphamide increases the risk of developing some kinds of cancers, which can occur years after taking this medication. Long-term use and higher doses of cyclophosphamide may lead to a higher risk. Bladder cancer is the most common cancer related to cyclophosphamide, so your doctor will recommend periodic urine tests to screen for this.

Points to remember
Because cyclophosphamide can cause serious birth defects, women who are pregnant or considering having a child should talk with their doctor before taking this drug. To avoid pregnancy, use an effective form of birth control throughout the course of this treatment. Also talk with your doctor about breast-feeding while on this medication.

Some of the side effects of cyclophosphamide may be serious. You should contact your doctor if you notice the following: blood in your urine, fevers and chills, easy bruising or bleeding, shortness of breath or swelling of the feet and ankles.

Because cyclophosphamide use increases the risk of infection, some doctors suggest that patients take a concurrent antibiotic called trimethoprim sulfa (Bactrim), unless there is an allergy to sulfa medications. Be sure to talk with your doctor before receiving any vaccines and undergoing any surgeries while taking this medication. Caution also needs to be taken if any household members, particularly children, receive live vaccines while you take this medication.

Drug interactions
Let your physician know all medications you are taking, including over-the-counter medicines and herbal supplements. Important drug interactions can occur with the following medications: the gout medication allopurinol (Aloprim, Zyloprim); phenobarbital (Solfoton); warfarin (Coumadin); thiazide diuretics, such as hydrochlorothiazide; and some psychiatric medications. Other medications also can interfere with cyclophosphamide.

Information to Discuss with Your Primary Care Physician and other Specialists
Be sure to notify your other physicians that you are taking this drug or have been given this in the past. This is important, as there are some long-term risks with this medicine that might need to be considered even years after taking the medication. Live vaccines should be avoided while on this medication and you should discuss updating your vaccinations prior to starting this medication. Because this medication can lower your ability to fight infection, it is important that you discuss this with any treating physician, as this may lead to a different evaluation or treatment.

For more information
The American College of Rheumatology has compiled this list to give you a starting point for your own additional research. The ACR does not endorse or maintain these Web sites, and is not responsible for any information or claims provided on them. It is always best to talk with your rheumatologist for more information and before making any decisions about your care.

www.rheumatology.org › ... › MEDICATIONS (Mary type in the search section on the right Cyclophosphamide and on the next page click on the top link)

tgal
06-23-2011, 10:35 AM
Mari,

"Fetched off" in our black country accent means "taken off" as so many members know.

You may be on meds that suite you even though nothing was found on your EEG as you've stated and they put me on medication years back for mine which was'nt the right ones and i'm not half brain damaged due to my own fault, it was due to neuro's and psychiatrists playing God with medication that put me this way and furthur running of tests by the Neuro surgeon he found the proper diagnosis for me and meds.

Wrong medication can do more harm to the brain than anything else and Alan can do without that.

Your correct Alan needs a second opinion and more tests running before they jump in to quick with meds as he's been through Alot.

I am sure so many other members know that is why I said something about this being an issue with so many countries and how we speak. I am sorry if I offended you by trying to understand something that we don't say in the states.

I agree too that wrong meds cause problems. My only point was that just because the EEG didn't show anything doesn't mean they should take him off all meds. He needs a second opinion and he needs to be treated properly.

Peridot20_Gem
06-23-2011, 11:10 AM
Mari,

You have'nt offended me, i was just stating it had the same meaning.

He does need a second opinion like you've stated but the trouble is all country's they work different and it's according to the situation which your in, that your allowed second opinions. Refering the meds until they can actually find what's wrong with Alan, i do know that Valium does'nt harm the nerves or cells of the brain it's a surpressive which slows the cells down and nerve system and he would'nt be getting no affects otherwise till they can diagnose him properly.

I am actually concerned for mary she's so worried and god knows how Alan feels with these hitting him out the blue.

Peridot20_Gem
06-24-2011, 02:36 AM
Hi Mary,

When you have time please let us know how Alan's been since you was intouch yesterday and do takecare yourself.

Love Terry xxx

MaryS42
06-24-2011, 03:42 AM
Hi Terry

Thats them started dropping the phenytoin and so far so good no seizures they said the only way to prove its lupus attacking the brain is to do an MRI and he can't have an MRI because the stent in his heart has metal in it so thats that basically!!!!! They are also saying the seizures could've been brought on by STRESS!!!! IE: Alan not handling the lupus diagnosis but im sorry im not convinced STRESS could make a human turn like the EXORCIST!!!! I think as i've said before if this was simply down to stress I'd be the one having seizures not Alan but when I said that to the doctors they said "women handle and deal with stress better than men" wanted to hit him is that bad? lol!!!!!.
Anyway they said so long as he doesn't have any seizures over the weekend he can go home on Monday and live a happy stress free life easier said than done eh!! Will continue to keep you posted on developments. Love M.x.

Peridot20_Gem
06-24-2011, 04:17 AM
Hi Mary,

I'm personally glad the phenytoin is being dropped as he does'nt need what i mentioned ontop, Alan as gone through alot.

I do hope the seizures keep off and give him a break because that's a hell of a lot for his system with what he's been going through and it's such a shame they can't do an MRI because of his stent they'd soon find out what's going on.
Well i've never come across anyone having seizures where stress as caused it but like i mentioned early if you do suffer with seizures and say your carm in yourself and someone as words with you or stress's your system that stress raises your electricity levels in your head and cells then you have seizures.

Mary like i said and they've said you won't know if the Lupus as done anything to his head and i hope it never does but i will state this a large majority of children and adults can have a course of seizure's just like Alan and never have them again and so many have never found the reason why it's happened but i do know that Lupus can cause seizures as it caused me to have them and i never knew.

I pray to god he does'nt have no more and if he's sent home..he's to rest and i hope you can talk to him and make him realize he can't afford to worry or stress himself because Lupus thrieves on these things besides depression and can makes symptoms worse.

Thankyou so much for letting me know besides the member's, how things have gone and i really admire how you've spoken up with the doctor's as it shows full support as alot of family member's let doctor's just do what they want.

Try and get as much rest as you possibly can yourself and my deepest thoughts are with you both.

Hugs & Kisses to you both Love Terry xxxxxxx

MaryS42
06-24-2011, 05:17 AM
Thanks Terry

Latest development is they have diagnosed Alan with Pseudoseizures(non-epileptic seizures) they have changed their minds ONCE AGAIN and said that because his lupus looks as though its being "well managed" they are saying thats down to the mycophenolate so they changed their minds about the cyclophosamide and have put him back on mycophenolate (clutching at straws) in my opinion !!!!!!!!!!!!! They have however said the mycophenolate may have caused the seizures in the 1st place (where do they get off playing god with Alans life!!!) it p****s me off excuse my french .

Love M.x.

Peridot20_Gem
06-24-2011, 05:28 AM
Mary,

Pseudoseizure's are psychological not neurological, so they think he's having these through a psychological reason.

If they think the mycophenolate caused it why on earth are they sticking Alan back on it..i've never known nothing like it swapping and changing like mad.

I'll add info below on the condition and add a link and i'll check to see if mycophenolate is ok with the diagnosis. Terry xxx

Peridot20_Gem
06-24-2011, 05:31 AM
PSEUDOSEIZURES

The term "pseudoseizures" describes events that appear on the surface to be seizures from epilepsy, but in patients who are not epileptic. Instead, these seizures are caused by abnormal psychology and as such are often thought of as a type of conversion disorder. Conversion disorders are conditions in which the patient suffers from symptoms of diseases that he does not actually have.

General Seizure Description
To understand what a pseudoseizure is, it is important to understand the general characteristics of a seizure. Seizures can take many forms, but in general they involve a sudden change in behavior, body function, sensation or movement. Seizures can range from a sudden and involuntary jerking of the limbs to a temporary loss of cognition and "freezing" during activities (known as a partial seizure).

Pseudoseizures vs. Seizures
The symptoms of a pseudoseizure are very similar to those of an epileptic seizure, except that their origin is psychological, not neurological. One of the characteristics of an epileptic seizure is that there is an abnormal discharge of electricity from the brain during the seizure. There is no such discharge during a pseudoseizure.

Distinguishing Features
Certain behaviors occur more commonly in pseudoseizures than in epileptic seizures. For example, a person having a pseudoseizure is more likely to bite the tip of her tongue (during a true seizure an epileptic's tongue goes limp and its tip is often inaccessible to her teeth). Other characteristics of a pseudoseizure include the seizure having a gradual onset, its duration lasting for two or more minutes, and the person shutting his eyes during the seizure. Pseduoseizures often involve the person's head moving from side to side, which rarely occurs in epileptic seizures.

Diagnosis
An electroencephalogram (EEG) can rule out epilepsy in a person experiencing pseudoseizures. This test involves attaching a series of electrodes to the patient's scalp to monitor her brain's electrical activity. As noted above, pseudoseizures lack the abnormal electrical activity characteristic of epileptic seizures. In addition, many epileptic seizures will result in the release of a hormone known as prolactin, which is present in the blood after the seizure. Pseudoseizures will not involve any subsequent rise in blood prolactin.

Pseudoseizure Risk Factors
Three-fourths of all people who suffer from pseudoseizures are women. Onset tends to occur in early adulthood or late in the teenage years. People who suffer from pseudoseizures generally also have other psychological disorders, such as major depression or an anxiety disorder. They also typically have a history of many undefined or poorly understood medical problems.

Read more: Symptoms of Pseudoseizures | eHow.com http://www.ehow.com/about_5042490_symptoms-pseudoseizures.html#ixzz1QCDFDgtf

www.ehow.com › Diseases & Conditions

Peridot20_Gem
06-24-2011, 05:39 AM
Thanks Terry

Latest development is they have diagnosed Alan with Pseudoseizures(non-epileptic seizures) they have changed their minds ONCE AGAIN and said that because his lupus looks as though its being "well managed" they are saying thats down to the mycophenolate so they changed their minds about the cyclophosamide and have put him back on mycophenolate (clutching at straws) in my opinion !!!!!!!!!!!!! They have however said the mycophenolate may have caused the seizures in the 1st place (where do they get off playing god with Alans life!!!) it p****s me off excuse my french .

Love M.x.Mary, the medications used are Anticonvulsant drugs, Anti-depressents and sometimes councilling is needed and they're using mycophenolate because the drug rapidly suppresses and these drugs are used with Pseudoseizures. xxx

MaryS42
06-24-2011, 10:05 AM
Quick update before I head back up to hospital Alan had 1st dose back on Mycophenolate this morning and yes you guessed it he's starting to shake again but hey they know best this pseudoseizures!!!!! He has dropped from 250mg phenytoin to 100mg overnight also is it just me or is it blatently obvious this is more than just a psycological problem or is it me I am the crazy one because I don't know anymore??????????????????????????????

tgal
06-24-2011, 11:16 AM
Oh sweety I am keeping you in my thoughts. This is way too much going on! Keep us posted when you can

Peridot20_Gem
06-24-2011, 11:50 AM
Quick update before I head back up to hospital Alan had 1st dose back on Mycophenolate this morning and yes you guessed it he's starting to shake again but hey they know best this pseudoseizures!!!!! He has dropped from 250mg phenytoin to 100mg overnight also is it just me or is it blatently obvious this is more than just a psycological problem or is it me I am the crazy one because I don't know anymore??????????????????????????????Thanks mate for updating we quick before you rush off.
By what you've said it's the Mycophenolate causing it and he was having seizures with that before they took him off it to move him to the other drug and now back onto it, it is used to suppress what seizures they've stated and mainly these Mary.

Mycophenolate is used in the treatment of several different types of rheumatic disease, including systemic lupus erythematosus (SLE) and diseases in which there is inflammation of blood vessels ('vasculitis').

Mycophenolate may also be used after organ transplantation, for example in kidney transplants.

I'm sorry about this lot with Alan but they won't be able to diagnose without that MRI procedure, Mary try hard for a 2nd opinion and ask for Mr Tim betts of the QE, birmingham to be called in on it, there's no harm in trying.

You ah crazy mate they just can't get it right and i'll wait to hear how Alan is and do it when your ready because of rushing about.

All my love is with you both. Terry xxxxxxxxx

steve.b
06-24-2011, 08:19 PM
it is so confusing.
we (the human race), know so little about how the brain functions.

i am thinking of you and alan.

MaryS42
06-25-2011, 03:04 AM
Thanks Steve hope you are keeping well I think all in all its very frustrating when it seems they are not doing enough or are in no rush to get a proper diagnosis they have started him back on mycophenolate and are weaning him off the phenytoin so we'll see what developments happen over the weekend.

Love to all M.x.

Peridot20_Gem
06-25-2011, 06:15 AM
Hello Mary,

Thanks for letting we know and i do hope he as a better weekend than what he's been suffering all week, please keep we updated mate when you can and i know it's hard rushing about to hospitals and sorting the home but get yourself a break in between.

I'm really hoping for the best for Alan.

Love to you both Terry xxxxx

MaryS42
06-26-2011, 08:55 AM
Hi Guys

Well as expected the phenytoin has now been reduced to 50mg and he's back on mycophenolate 250mg twice daily for the last 2 days and he had 2 seizures last night and 1 today so its not looking good.I am livid,angry,stressed,emotional,exhausted and hurting like hell because his doctors don't seem to care don't seem to be helping arn't interested and I have to sit there unable to do anything to ease his suffering why is this world so cruel to the good guys?????????? M.x.

tgal
06-26-2011, 08:57 AM
Hi Guys

Well as expected the phenytoin has now been reduced to 50mg and he's back on mycophenolate 250mg twice daily for the last 2 days and he had 2 seizures last night and 1 today so its not looking good.I am livid,angry,stressed,emotional,exhausted and hurting like hell because his doctors don't seem to care don't seem to be helping arn't interested and I have to sit there unable to do anything to ease his suffering why is this world so cruel to the good guys?????????? M.x.

Oh I wish I was there to give you a big hug right now! This just doesn't seem right and there is nothing that I can do to help. I am at a loss for words but please know that my thoughts are with you

Peridot20_Gem
06-26-2011, 10:22 AM
Hello Mary,

Life in general is a test for we all and in my opinion they'll never be able to diagnose Alan right without that MRI to show what's going on with his brain but through circumstance and his stent that's impossible...so all these doctor's are hoping is for the best and by seeing which medication will break them and stop them from reoccuring.

I wish i could be with you to help through this most stressful time and few words would be said to these specialist as well.

I know it hurts mate but until they ease there's nothing which can be done and getting worked up and worried won't help you or Alan as he'll sense this but my full love and support is with you mary.

Large Hugzzzzzzzzz your way. xxxxx

MaryS42
06-26-2011, 12:12 PM
Hi Terry

Too late went to hospital tonight and had a huge fight with Alan because he grilled our daughter to find out if im eating properly etc and she told him no but what am I supposed to do I can't eat I can't sleep I jump every time the phone rings the doctor gave me oxazepam for anxiety but I can't take them as you can't drive with that particular drug ran out the ward crying my eyes out and now feel guilty because of it I hate this bloody disease I hate the stress I hate myself right now.!!!!!! M.x.

Peridot20_Gem
06-26-2011, 03:25 PM
Oh christ Mary this is all you need now more pressure...i know Alan's in a bad situation with this lot going on but it could make you ill as well and it's a shame your daughter gave in when she could have spoken to you personally one to one about your eating etc.

I won't mince my words but when you go to see him expect the inquisition on what your doing and if your eating and what Alan does'nt realize those words he had with you can stress his brain even more and especially worrying.

Your in the same boat as i was over 2yrs ago my hubby went in for a gallbladder to be removed and was in a week, i was waking early walking the staff for an hour setting out at 11 needing to get two buses there and spent from 2 till 4 visiting rushing back home feeding the dog and running him again to be out at 5-30 to get to the hosptial for 7-8pm then getting back home late then taking the dog over the canal at 9-30pm at night then got in grabbing abit of food then bed and when your doing all this...like i did you don't think of number one just the person you love and i'm really surprised Alan as looked at it in this way either, although he loves you loads.

Mary can i say something you need to step back and evaluate what's going on and the best way which works for you and like you said the hospital can phone you if Alan takes ill, if your visiting twice daily, do it once for a few times to get rest and tell Alan this and if he moans then state what he argued with you over.

You need rest mate and this lot with worry is adding alot of pressure...oh i wish i was by you instead of miles away to give you solid support and help.

My heart goes out to you mate...as i do know your in a terible position.

All my love Terry xxxx

MaryS42
06-26-2011, 04:04 PM
Hi Terry

First of all my daughter is only 9yrs old she doesn't know any better and Alan shouldn't be using her for information im fine really yes its a lot to cope with afternoon visiting is 3-4pm by the time I get home I only have less than 2hrs before I need to leave again for nightime visiting and im snacking not really eating but thats because I don't feel like eating and I know thats down to stress etc I really got upset because he said some horrible things to me like if im not looking after myself then that shows I dont really care about him because he's worrying about me.Honestly im fine im exhausted yes but ive been through this routine so many times now when he 1st had his accident he was in hospital 7 weeks and he's been in and out of hospital god knows how many times over the past 5 years ive done this all before.We'll be fine its just so stressfull at the moment and trust me if i didnt have you to sound off to id be lost and you're definately giving me solid support. Love M.x.

steve.b
06-26-2011, 06:10 PM
i wish my shoulder was big enough to reach across the ocean.

i am thinking of you both.

Peridot20_Gem
06-27-2011, 06:56 AM
Hello Mary,

Well you daughter would'nt know better at 9yrs of age in her eyes she's just answering her dad but Alan should know better as it's like using your daughter as a go between to find out what he needs to.
So really your doing what i was doing with my hubby, he noticed i'd lost weight when he came out of hospital but never said much because he knows i'd have had my answer for him straight away and actually stress can make you go off your food and you've got enough to send you that way.
Arguing in an hospital is'nt nice when other ears are tuning in...he knows your worried about him but when a couple are close you do actually get this, although he's in there having seizure's and resting it does'nt stop him thinking about you and how your coping because in Alan eyes and with what he's gone through, he's most likely thinking i should'nt be going through this and also Mary which is true.

See you've just admitted it you've gone through this over over a period of 5yrs and he's worried because when he's come out he's seen a change in his wife, it could be weight loss and also seeing stress your going through...he is concerned and worried about your health.

I know it's hard and your stressed to bits but if it happens again walk away till next visiting time or go for a break to both give you breathers in betweeen.

I do hope he's had none today and it is such a shame and alot of pressure for you both.

All my love to you mary xxxxxxxxxxxx

MaryS42
06-27-2011, 08:41 AM
Hi Terry

Well he's back home with us thankgod I feel he'll get on a lot better here with me than up at that hospital he's off the phenytoin completely and back on 250mg mycophenolate twice daily he's very weak and shaking a little but so far so good will continue to keep you all up to date at least I won't be as stressed trying to do twice daily visits oh and we kissed and made up lol!!! Thanks to everyone for all the messages of love and support.
Love M.x.

Peridot20_Gem
06-27-2011, 12:09 PM
Hello Mary,

I was shocked at your reply Alan being back home but could'nt reply as i was going for my tea sorry.

He's shaking at the rest of the phenytoin coming out of his system but within a couple of days he should be fine concerning that and i'm touching wood for you mate this end that all goes well with Alan being back home in his own enviroment.

Lovely to hear you've both made up and now you can get some good rest and go at your usual steady pace before he was rushed in.

Both of you take it easy and it's great news with what you've both been through and update when you can.

All my love Terry xxxxxxxxx

MaryS42
06-27-2011, 12:27 PM
Thanks Terry

I hope you are right and that the shaking is him coming off the Phentoin and not all this kicking off again!!!! I never mentioned before because I didnt think it was going to happen but we are booked into a place called Ribby Hall 8 mile outside Blackpool due to go on the 4th July its a private cottage but there is also a Spa Hotel within the grounds which I intend to make full use of lol I think I deserve it ha ha and I will totally keep in touch with regards to developments and just for chats don't know what I would've done without you these past few weeks love you loads M.x.

Peridot20_Gem
06-27-2011, 12:47 PM
Hello Mary,

Your welcome and it is the phenytoin because he's completley off it now his system needs to settle down now...get him in bed and make him rest even more but in the pleasure of his own home.
Oh very nice mary you need that break (i fit into small suitcases) lol Oh i would go for it all and really chill and relax, it's funny but my Auntie only went to scotland on holiday she used to say the place is beautiful.
Well you do deserve it i'll give you credit on that one with all the rushing about you've done but there's nothing better than a good break to lift your spirits.

Mary it will be lovely hearing off you when your able to and i mean when your able to because you both need rest now and from the bottom of my heart i wish Alan the very best with the seizures and you a less stressful life, without hospitals involved.

Love you loads to mate even though we're miles from one another. xxxxxxxxxxx

steve.b
06-27-2011, 06:03 PM
alan should feel better at home.
less stress is a good thing.

Peridot20_Gem
06-28-2011, 09:47 AM
Mary just dropping in to see how Alan is now being at home and are you feeling better and carmer in yourself besides.

Luv to you both Terry xxx

MaryS42
06-28-2011, 11:13 AM
Hi Terry

He had a small episode today but it didn't turn into anything major thankgod however my dad was told today he has cancer so yet again more worry and stress!!!! Never rains but it pours eh mate.Will keep you updated on Alan Love M.x.

Peridot20_Gem
06-28-2011, 11:25 AM
Hello Mary,

I was'nt expecting a reply so quick but cheers mate anyway for letting we know.

It sounds to me like Alans carming down and i hope your able to handle him when he's like it but i am really SORRY to hear about your dad...i lost my dad to cancer of the lung and liver and his brother's and sister's have had strokes then cancer, my doctor keep an eye on me well, through the Lupus and because of what it can cause because on my moms side is Diabetes, lung diease, heart attacks and then death.

You have got your hands full i do hope you've got brother's and sister's to help out and not the only daughter with what you have already with worry... i do hope your keeping well though.

You takecare mate and all my love xxxxxxxxxx

MaryS42
06-28-2011, 11:32 AM
Yes Terry I have a sister and brother who will both help out as my dad is my mums full time carer as my my mum is disabled and a severe athsmatic so sorry to hear you've had your own share of grief its not easy is it. Love M.x.

Peridot20_Gem
06-28-2011, 12:16 PM
Oh i am pleased mate you've got support refering your parent's and your mom being disabled will be a worry to your dad now because of him having the cancer...Lifes so bloody cruel at times.

There's been alot of grief and hotache in my family down the line, so besides myself and illnesses i've seen alot with family members besides friends and my hubby last year was on serious treatment for 6mths cancer cells on his liver they found that when they did his gallbladder and i had to watch him alot because the side affects was terrible and they want him to start another new lot the end of the year coming out on the market as the other meds didi'nt remove them, the specialist as given him 5yrs just over and he wants to have him added to the list at the QE, Birmingham for a liver transplant.
The specailist he see's is the one i'm going to about my tumour as he knows my background going with ste.

What a life i say mary, nothing but full time worry xxxxxxxxx

MaryS42
06-28-2011, 03:15 PM
God Terry you've also had your fair share of troubles sometimes I wonder if there is a god ????? Life is bloody hard enough without adding more stress and worry just seems to be one thing after another keep in touch Love M.x.

Peridot20_Gem
06-28-2011, 04:04 PM
Mary i ah i'm not a believer in god such because it does make me wonder, why do so many good people get hurt so much.

When ste saw his specialist it was when i was starting the plaquenil last time, i told the specialist i wow bother with it ste's more important putting ste before myself like you with Alan and straight away he said no you need to be sorted also and ste can have a break and we'll see how you go in between.

Half the time i walk about holding my side with pain off my liver and then ste's at it...i dow think we'd get much at a car boot sale mate.lol

With everything i've gone through if i dropped dead tonight, i've often said to ste i'd like my body to go to research with what's happened and they find out what the drugs do to the system and if i thought i was helping with info regarding other people i'd rather my body go that way.

I'll keep intouch mary and i hope you keep ok and eat woman as he'll have his eye on ya.lol but in general i really hope Alan goes fine for you both and the cancer is'nt to bad yet with your dad and they're able to help him.

My heart goes out to you mary...as i do deeply understand.

All my love to you Terry xxxxxxxxx

Peridot20_Gem
06-28-2011, 04:08 PM
http://images44.imikimi.com/image/1aDgk-11e.gif?height=400&scale=max&width=400 (http://imikimi00.com/link/link_through/1aDgk-11e)

MaryS42
06-29-2011, 02:13 AM
Hi Terry

Thankyou so much for my Angel it is beautiful you have made a very dull day in Scotland a very bright day now.xxxx Love M.x.

Peridot20_Gem
06-29-2011, 03:05 AM
Mary,

Just keep we updated when you have time now, with such alot still going on.

Love Terry xxxxx

MaryS42
06-30-2011, 11:15 AM
Hi Terry

Not too bad a day today just one relatively small seizure a lot of cramping causing him a lot of pain but other than that he's had quite a good day hope you are well Love Mary.x.

Peridot20_Gem
06-30-2011, 03:18 PM
Hello Mary,

I am pleased he only had a slight one but had a farely good day but seizures do give me the cramp so it may be off that and i hope your keeping well.

Mary i've had alot of pain off my lungs today and my liver been giving me some going over but i think my operation is slowly healing now and they asked me to have a swab to double check incase the Lupus may have caused an infection and that came back clear, so that's less worry.

You takecare mate and i hope the road for Alan concerning the seizures goes up hill from now on my friend.

Love to you both Terry xxx

steve.b
06-30-2011, 10:40 PM
good to hear alan is better now, than he was a week ago.

how are you? rested?
eating 3 square meals a day lol

MaryS42
07-02-2011, 08:57 AM
Ha Ha funny Steve!!! Yes im ok im eating a little not sleeping too well but on top of everything else going on with Alan my dad got told he has cancer a few days ago so its still a worrying time for all of us as my sister died when she was 37 from breast cancer so we automatically think the worst don't we my dad has a tumour on his kidney but they think it may have spread elsewhere so we just need to wait and see when they operate.I am pleased to say that Alan has been quite good a few tremors and a few small(ish) seizures but nothing too major he's having terrible cramping pains in his legs,hands and arms mostly don't know whats causing that and since going back on the Mycophenolate he has had nausea and diarrhoea which he didnt have before but other than that he's not too bad considering.We are heading down to England on Monday for a well deserved holiday I have booked a cottage for a week and hope the break will do us all some good.Take Care M.x.

Peridot20_Gem
07-03-2011, 02:40 AM
Hello Mary,

Nice to hear your eating better mate now settled more but refering the sleeping that's being on the alert for Alan which is causing that i bet.

I am pleased to hear Alan's not been to bad with the seizure's and tremor's can come from a variety of causes mary, does sound like is body is settling more. He may be having side affects from the Mycophenolate and all drugs carry them but if it gets to much for his body and himself in general talk to your doctor about it.
I hope your dad goes on ok mary i really do for you all.

I've not been having pains from the operation, the tumour on my liver as been really hurting bad and to top all the pain had a seizure lastnight and when i came round i was all over the show my hubby made me get to bed but don't feel much better for it this morning.

Well i hope you find somewhere nice to go for your hols and have a lovely time.

All my love to you both Terry xxx

MaryS42
07-03-2011, 06:09 AM
Hi Terry
God you are having your own set of health problems also Alans still shaking but no major seizures he's started having diarrhoea and nausea the past 2 days but think thats a side effect of the mycophenolate hoping he's going to be ok to travel down south tomorrow fingers crossed. Hope you keep well my friend and if I get the chance i'll try to keep up with how you are doing over the course of this week and keep you up-dated on Alan.

Love and Hugs M.x.

Peridot20_Gem
07-03-2011, 08:42 AM
Hello Mary,

I hope Alan travels ok for you and your break goes ok and just get intouch when possible as you both need a good break and rest and you both need this break to help release stress and pressure.

Mary i'm used to my problems mate but life still as to go on.

Do takecare and both of you have a lovely time.

Hugzzzz to you mary xxxxxxx

MaryS42
07-03-2011, 12:52 PM
Hi Terry

Spoke too soon Alan has been admitted to hospital at 4pm this afternoon they now think the diarrhoea has been caused by inflamitory colitus brought on by mycophenolate I will let you know how it goes and what happens.Doesn't look like we'll be getting on that holiday afterall.!!!!!

Love to you Mary.xx

Peridot20_Gem
07-03-2011, 12:56 PM
Hello Mary,

Thanks for getting back to we and letting we know...they should be disgusted with themselves at not finding something properly to suite him and that's all he needs now is colitus, i'm glad you reacted quickly though.

It looks like your holiday as gone, i am sorry for you both and you take care.

All my love Terry xxx

MaryS42
07-04-2011, 12:12 AM
Hi Terry

Guess what they have decided to stop the mycophenolate altogether(a bit late now) as far as we are concerned the damage has already been done!!!! He's been on fluids since he got admitted and they said he had a comfortable night.I have an excited little girl here waiting to see if her daddy is getting home so she can go on her holidays it breaks my heart because she was only 4yrs old when her dad had his accident so all she's ever known is a sick daddy and she is so amazing with him she's like his own little nursemaid. Hopefully if things improve we might still get a few days away fingers crossed.

Love and Hugs M.x.

steve.b
07-04-2011, 01:20 AM
my fingers are crossed also

MaryS42
07-04-2011, 01:29 AM
Thanks Steve will keep you all posted. M.x.

Peridot20_Gem
07-04-2011, 02:41 AM
Hi Terry

Guess what they have decided to stop the mycophenolate altogether(a bit late now) as far as we are concerned the damage has already been done!!!! He's been on fluids since he got admitted and they said he had a comfortable night.I have an excited little girl here waiting to see if her daddy is getting home so she can go on her holidays it breaks my heart because she was only 4yrs old when her dad had his accident so all she's ever known is a sick daddy and she is so amazing with him she's like his own little nursemaid. Hopefully if things improve we might still get a few days away fingers crossed.

Love and Hugs M.x.Morning Mary,

It's abit late in the day to stop the mycophenolate now damage as been done and besides what Alan as to put up with, now the colitis as got to be sorted...which i hope to god does'nt leave him suffering with colitis and now they've got to really sort him out concerning the seizure's if they re-occur.

(Mary like i stated on your profile keep records of this lot what's happening if your able to)

They've got him on the fluids trying to sort the colitis out and remove the inflamation...i do feel sorry for him, it's terrible.

Refering you daughter she must be brilliant with Alan because like you said since 4 she's seen nothing but illness with her dad bless her.

I do hope you manage a few days away but it's how they sort Alan out from now on and now your trips will start again, my heart goes out to you both.

Please keep we updated when you can because you'll be on the rush around again.

All my love Terry xxx

Peridot20_Gem
07-04-2011, 05:19 PM
Hello Mary,

When your not rushing about and troubled out your mind concerning Alan...when you can please let we know how things are going.

Thinking of you both dearly. xxx

MaryS42
07-11-2011, 01:07 PM
Hi All

Well thats us back from our holiday down south good news Alan didn't have a single seizure while we were away however the diarrhoea lasted for a further 5 days so Alan was in bed for 5 days he managed to get out for 1 day only not much of a holiday for him!!!!! The cottage was beautiful and the kids had a ball so that was good. We are up at hospital tomorrow and Wednesday so will let you all know how we get on.I am totally convinced now that the mycophenolate is to blame for the seizures and the new diagnosis of inflamitory colitis.

Love to all M.x.

Peridot20_Gem
07-11-2011, 02:31 PM
Hello Mary,

I've not been on for a few days myself. Oh i am pleased Alan did'nt have a seizure but a shame he could'nt get out more but one day is better than nothing.

Well i am pleased the kids loved it and at least you got your break and i hope it did you well also.

I wish you both all the best with the hospital tomorrow and what meds they finally decide with Alan and i do hope the colitis does eventually move but there's never 100% where that's concerned.

Hugs & Kisses to you Terry xxxx

steve.b
07-11-2011, 07:34 PM
any escape from the normal would have been good for alan.
i hope you are a little rested.

hopefully the doctors have a little more knowledge.

Peridot20_Gem
07-12-2011, 08:11 AM
Hello Mary,

Hows things today because Alan's had to go to the hospital which you stated & what have they said if you don't mind me asking.

Terry xxx

MaryS42
07-12-2011, 02:26 PM
Hi Terry

No news today he just got bloods done he see's consultant who put him on the mycophenolate tomorrow at hospital and we'll have to tell her he has stopped taking it because of the diarrhoea and see what she suggests next she won't be happy but I don't care he hasn't had shaking or a single seizure since he stopped the mycophenolate so now totally convinced that was to blame for seizures,diarrhoea etc. We think she is going to suggest cyclophosamide(excuse the spelling) as they mentioned this when he was in with the seizures however we got talking to a really nice man up at hospital today and he said he had never before had a seizure until he was put on cyclophosamide his were so bad he said he ended up in intensive care so im not so sure I want them to start playing god with Alans life once again .The good thing is we are finally going to see Alans Rheumatologist next week so we are hoping to arrange for Alan to be treated by him for the lupus and not the kidney specialist who has been treating him since he was diagnosed will keep you posted on how all that goes next week.Hope you are keeping well.

Take care luv M.x.

Peridot20_Gem
07-12-2011, 03:50 PM
Hello Mary,

Thanks for getting back and letting we know what happened and the consultant may not be happy but not all drugs suite everyone and it may possibly of been the course of the seizures and diarrhoea is'nt pleasent for anyone when it happens out the blue.
Mary if it comes to it about the other drug, also state knowing a person where this drug caused seizures and that you have great concerns about this drug as Alan as been ok.
Now that is good news him seeing the rheumatologist because he'll know what to put Alan on seeing his blood results and mention the seizures the lot because i had to when i saw my rheumo the first time.

I do wish you both the best of luck with tomorrow and when you have time please let we know mary.

Hugzzzzz you way to you both. Terry xxxxx

steve.b
07-12-2011, 10:48 PM
I do wish you both the best of luck with tomorrow and when you have time please let we know mary.

i wish you luck... and the doctor knowledge

MaryS42
07-13-2011, 08:10 AM
Hi Guys

Well as expected Alan has now been put on Cyclophosamide so fingers crossed it all goes well he's not to start it till next week we're hoping he doesn't experience any nasty side effects like he did on the mycophenolate here's hoping will keep you up to date with progress.

Love to all M.x.

Peridot20_Gem
07-13-2011, 10:58 AM
Hello Mary,

Cheers mate for letting we know how things go and starting Alan on it next week is giving his system a break from the meds before he starts it...fingers crossed for you this end mary that no seizures and affect start and hopefully they're giving him the right meds this time.

Thank you for keeping we updated and i hope your healths fine besides, both of you takecare. Love Terry xxxx

MaryS42
07-15-2011, 07:26 AM
Hi Guys

Alan got news today he's to start chemo on 26th July so fingers crossed all goes well.Very quick update xxx Luv M.x.

Peridot20_Gem
07-16-2011, 01:32 AM
Hi Mary,

Thanks for the quick update and we all appreciate it.

I wish Alan all the best of luck with the chemo on the 26th and besides that seizures holding off for him and i really hope your keeping fine besides mate.

Do takecare and all my love Terry xxxxxxxxx

MaryS42
07-17-2011, 12:46 AM
Hi Terry

Thanks for your good wishes we hope so too that all goes well this time round fingers crossed how are you doing i'm always on here moaning about one thing or another to do with Alan and you're always on giving me advice but how are you whats been happening lately I hope and pray you are well? Take care and keep in touch Luv M.x.

Peridot20_Gem
07-18-2011, 05:00 AM
Hi Mary,

Sorry i'm late replying had a long weekend with my hubby and his car show but never again way to much for me.

You ah always moaning on here to do with Alan i'd say expressing your feelings and concern for your hubby and that's what we're here for to help in anyway possible but i really do hope things work this time and there's no full back on issues to do with Alan.

Love Terry xxxxxx

MaryS42
07-21-2011, 10:41 AM
Hi All

Well at long last Alan seen his Rheumi today and im happy to report that he is now going to take over all Alans future care as far as the Lupus is concerned and he is also going to have his own team of kidney specialist take over Alans kidney failure also thank god because we have both lost all faith in the doctors at the other hospital.So we have to make our excuses as far as going to start the cyclophosamide next week to allow the rheumi to put things in place at his hospital.Lastly he is absolutely convinced that the seizures are down to the Lupus attacking the brain however he is going to have further tests done to confirm his suspicions.Hope you are all well keep in touch Love M.x.

Peridot20_Gem
07-21-2011, 04:44 PM
Hello Mary,

Lovely to hear from you.

"Brilliant news mate" concerning Alan's rheumo taking over his Lupus and also kidney specialist's who deal in this work at least he's in better hands now with specialist's who deal with these complaints.
Mary let the rheumo sort the issues out and i said a good while ago Alan's seizures may have come from the Lupus as Lupus caused me my seizures in life...i'm so pleased though that the rheumo is doing furthur tests to clarify Alans seizures.

I hope both your minds are both at ease more with people knowing what they're doing...as those other's had'nt got a clue when Alan was suffering, oh i am chuffed for you mate.

Please let we know what they say or what tests are run when your able to.

All my love to you both & fingers crossed from me. Love Terry xxx

steve.b
07-21-2011, 09:04 PM
may i be bold enough to suggest......
give the rhuemy full authority to prescribe whatever he see suitable.

if his team is going to be in full control of alan.
then give him the control.

he would only prescribe medication he thinks suitable.
if he has such a team of other specialists available,
he would be considered a good specialist.

MaryS42
07-22-2011, 02:56 PM
Loving the profile photo Steve ha ha

Peridot20_Gem
07-23-2011, 05:47 AM
Hi Mary,

I hope all is well your end and steve's right in what he says with the Rheumo and giving permission but if he suggests tablets for Alan concerning Seizures's...well that is a neuro's department and if it does come to that i'm sure the Rheumo will get someone involved who knows what they're doing, alot better than the other's as he'll see who's treated him previous.

Love Terry xxx

MaryS42
07-24-2011, 01:32 AM
Hi Terry

I dont think the rheumo will suggest tablets for seizures as he has already said he is going to organise for Alan to have further tests done to get an absolute conclusion that it is lupus attacking the brain by a neurologist so we're not worried about that he's a lovely man and we have every faith in him that he'll do his absolute best for Alan. I hope you are well and take care.

Love M.x.

Peridot20_Gem
07-24-2011, 03:59 AM
Hi Mary,

Nice to hear off you but even better to know for you both that Alan's with a good Rheumo, that's what really counts.

I do hope they get to the bottom of what's going on and he seems to know what he's doing, fancy swapping rheumo's mate as mine is bloody useless, still waiting for an appointment...i'm going to ask my dermo who i see every 3mths if he'll treat me instead.

Otherwise just been having the same ususal complaints, i do hope you and Alan are fine till the rheumo starts with the tests.

All my love to you both Terry xxxxx

MaryS42
07-29-2011, 04:59 AM
Hi All seen rheumi yesterday and no thanks to the useless hospital we were at we now have yet another hold up (we appear to have 2 different biopsy results) one has diagnosed Lupus Nephritis SLE stage 4 and the other is mesangiocapillery glomerilonephritis-please excuse terrible spelling) basically the nephrologist at the bad hospital sent a letter to Alans GP saying lupus nephritis sle stage 4 and sent a letter to the rheumi saying the other thing which im not even going to attempt to spell again lol!! So we now have to wait till the new nephrologist has a look at the biopsy results and makes his own diagnosis before we can commence with the suitable treatment so its going to be a bit of a waiting game again to get proper diagnosis but at least we are still on the right track just going to take a wee while longer to sort things out. Hope everyone is well take care Mary.x.

tgal
07-29-2011, 06:58 AM
Oh Mary! This has just been a nightmare experience for ya'll! What date is the biopsy scheduled? One thing that upsets me the most about this disease is that too many people that are TREATING us have no clue what they are doing! It is like they have never heard of Lupus! Too often I see the same thing happen to me happen to others and it infuriates me! Instead of helping us get well they wait and let us get worse and worse while they try and LEARN watching us.

How are the seizures? Did they ever get those under control?

MaryS42
07-31-2011, 03:52 AM
Hi He's not having another biopsy they are going to ask for the slides from the biopsy he got in Jan this year and look at them and make their own decisions as to what exactly Alan has and then once they are happy they will start treating him accordingly. Luv M.x

lovedbyHim
07-31-2011, 03:57 AM
Hi He's not having another biopsy they are going to ask for the slides from the biopsy he got in Jan this year and look at them and make their own decisions as to what exactly Alan has and then once they are happy they will start treating him accordingly. Luv M.x

Thank you Mary for keeping us posted I sure hope you get to the bottom of everything soon. The waiting is exhausting.

tgal
07-31-2011, 07:35 AM
Thank you for the update. I know this has to be a nightmare for both of you. Hopefully things will get worked out very soon!

MaryS42
08-01-2011, 02:37 PM
Hi guys

Breaks my heart to say it but Alans seizures have started up again and he's been off mycophenolate for over a month so we can safely say its not that. So we have come to our own conclusions that its looking like Lupus attacking the brain and his rheumi agrees with us so he is going to arrange for further tests as we need to get a definate answer as to the cause of them will keep you all posted . Love to all M.x.

lovedbyHim
08-01-2011, 02:49 PM
Oh Mary....huge hug for both of you.

tgal
08-01-2011, 03:21 PM
Hi guys

Breaks my heart to say it but Alans seizures have started up again and he's been off mycophenolate for over a month so we can safely say its not that. So we have come to our own conclusions that its looking like Lupus attacking the brain and his rheumi agrees with us so he is going to arrange for further tests as we need to get a definate answer as to the cause of them will keep you all posted . Love to all M.x.

Hi Mary. I am so sorry to hear that his seizures. That is so very hard to deal with (on the patient and the family. I too have seizures. I went to every doctor trying to find out what is wrong. It just seemed like no one knew what they were doing! I started to begin to think that I was simply crazy! Finall I found a doctor that looked at me and said "well of course they can't find anything. This is being caused and inflammation of the arteries. When they get inflamed they don't send enough blood to the brain and you seize." Hmm.. very interesting that no one before you figured that out! I am still on anti seizure meds which has helped but my steroids help more then anything.

I hope Alan finds a doctor that has an "AHA" moment and gets him on the right meds

MaryS42
08-03-2011, 11:17 AM
Hey Guys

Has anyone heard from Terry(peridot20_gem) havn't seen or heard from her on here for a while and was a bit worried and also can't seem to send her a private message if anyone can help i'd appreciate it thanks Mary.x

steve.b
08-03-2011, 10:37 PM
mary, terry has parted company with us.
she no longer comes to our site.

MaryS42
08-04-2011, 09:58 AM
Thanks for letting me know Steve I can stop worrying now. Love M.x.

MaryS42
08-05-2011, 11:33 AM
Hi All
My dad went down for surgery today as he has cancer and they were removing his kidney and tumour he's 72 so its a big operation for him to go through I had the same surgery myself but I was 23yrs old when I had mine so waiting patiently for my sister to phone me as she is in the hospital just now to see how he is I wanted to go in myself but Alan had 2 really bad seizures today so I can't leave him on his own as this is now 4 seizures this week alone.God I hate this disease I hate cancer and I hate that all the people I love most in the world are suffering and I can't do a thing to help them why is life so bloody cruel? Sorry rant over M.x.

tgal
08-05-2011, 07:32 PM
Hi All
My dad went down for surgery today as he has cancer and they were removing his kidney and tumour he's 72 so its a big operation for him to go through I had the same surgery myself but I was 23yrs old when I had mine so waiting patiently for my sister to phone me as she is in the hospital just now to see how he is I wanted to go in myself but Alan had 2 really bad seizures today so I can't leave him on his own as this is now 4 seizures this week alone.God I hate this disease I hate cancer and I hate that all the people I love most in the world are suffering and I can't do a thing to help them why is life so bloody cruel? Sorry rant over M.x.

I am so sorry for what you are having to go through. Sometimes it just seems like when you get the handle on one thing 4 others replace it! Sorry about the seizures and the cancer. Remember to take care of yourself because you are not help to anything if you fall apart

steve.b
08-05-2011, 08:13 PM
( ( ( h u g s ) ) )

MaryS42
08-07-2011, 03:30 AM
Hi All just a quick update Alan hasn't had any more seizures since the 2 on Friday just a few tremors.My dad made it through his surgery however he had 2 heart attacks yesterday so its not looking good for him right now.Hope everyone is keeping well.
Take Care M.x.

steve.b
08-07-2011, 04:11 AM
thinking of you all

tgal
08-07-2011, 07:20 AM
Oh Mary I am so glad that the seizures have slowed. They take such a toll on the body and the mind. I also know how hard it is to watch that happening to someone you love.

I am glad your dad made it through surgery. That is a difficult one to have. Were the heart attacks before or after the surgery? What are you doing about taking care of yourself? Please be careful not to cause yourself harm. Please take advantage of this time that they are in the hospital to take care of Mary. Once the men in your life leave there it will be all on you. Let the nurses handle things and take naps, take a break or whatever you did to do for yourself. Doing that will allow you to be at your best when everyone comes home

Keep us posted please

MaryS42
08-07-2011, 10:26 AM
thanks Mhari my dad had his heart attacks after the surgery and Alan is at home just now refusing to let me phone an ambulance he has literally just had a horriffic seizure but begged me not to phone an ambulance I am stressed beyond belief just now as I don't know what to do for the best.I understand that Alan doesn't want to be back in hospital but all this is taking its toll on me and my daughter is only 9yrs old she looks horrified when he's having a seizure they are so violent. I feel so alone having to deal with all of this on my own it feels like no-one cares and I know people(friends and family) have their own lives to get on with so you don't like asking them to help out also Alan doesn't like anyone else but me taking care of him.
Sorry have gone into a rant again Luv M.x.

tgal
08-07-2011, 10:43 AM
thanks Mhari my dad had his heart attacks after the surgery and Alan is at home just now refusing to let me phone an ambulance he has literally just had a horriffic seizure but begged me not to phone an ambulance I am stressed beyond belief just now as I don't know what to do for the best.I understand that Alan doesn't want to be back in hospital but all this is taking its toll on me and my daughter is only 9yrs old she looks horrified when he's having a seizure they are so violent. I feel so alone having to deal with all of this on my own it feels like no-one cares and I know people(friends and family) have their own lives to get on with so you don't like asking them to help out also Alan doesn't like anyone else but me taking care of him
Sorry have gone into a rant again Luv M.x.

I know this is going to be very hard to hear but there really isn't any need to be in the hospital for seizures once they have been diagnosed and the patient has meds. I learned this on one of my trips to the ER to have blood work to prove to SS that I was taking my meds. The doctor looked at me and said "You had a seizure? I said, "yes Sir". He said, "do you have a history of seizures?" I replied "Yes Sir". He then looked at me and said "The why are you here? There is no reason for a diagnosed seizure patient to come to the hospital. Nothing we can do that can't be done at home". Sadly it is a true statement. All that needs to be done is to make sure that the patient doesn't hurt themselves. It will pass and the patient will usually be really sore and kind of fuzzy headed but all that can be done after is allowing the patient time to rest. You may need to sit your daughter down and explain what is going on and what she needs to do when/if she is there when he he seizes with her around (Please never do the spoon in the mouth thing. That can cause more harm then good.) I am posting a link here that may help.

What to do if you witness someone having a seizures. (http://epilepsy.about.com/od/faqs/a/firstaid.htm)

I am really sorry about your dad. I hope everything gets better with both of the men in your life. I will keep thinking about all of you

MaryS42
08-07-2011, 03:17 PM
Thanks once again Mhari the problem we have is neurologists didn't see Alan in a full blown seizure all she seen was him shaking (looked like he had Parkinsons disease) she said it was non-epileptic attacks due to stress!!!! He got dis-charged from hospital with that as a diagnosis and no drugs to treat further attacks they gave him epilepsy drugs while he was in hospital and gave us nothing to go home with they said get him a psycologist to discuss his stress over with but Alan has been seeing one of the top psycologists in Scotland now for over a year to help him come to terms with everything thats happened to him since his accident.So where do we go from here?I'm at a loss I really am . Luv M.x.

MaryS42
08-08-2011, 07:37 AM
Problem solved Alans rheumi has had him admitted into hospital until they get to the bottom of these seizures and a proper diagnosis and treatment put in place. Luv M.x

steve.b
08-08-2011, 10:07 PM
good.
hopefully her can get to the bottom of the problem !!!!!!!!!!!!!!!!

it is hard for you, but probably the best for alan.

remember 3 square meals a day..... dont want your daughter telling on you lol

tgal
08-11-2011, 03:54 PM
Hi Mary,

I was just thinking about you and wanted to let you know that you and Allen are in my thoughts

MaryS42
08-13-2011, 02:58 PM
Hi All Alan having between 3 and 5 seizures a day so has been told to remain in bed as everytime he stands up he has a seizure neurologists coming to see him on Monday will keep you all posted . Love to all M.x.

tgal
08-13-2011, 03:08 PM
Hi All Alan having between 3 and 5 seizures a day so has been told to remain in bed as everytime he stands up he has a seizure neurologists coming to see him on Monday will keep you all posted . Love to all M.x.

Thanks for the update! I am glad he has a neuro coming! Maybe he will get answers soon

MaryS42
08-16-2011, 09:35 AM
Hi All well Alan got out of hospital after being in for a week with the seizures neurologist said without an MRI he can't say for certain but now Rheumi,Neurologist and kidney specialist all think the seizures are Lupus attacking the brain so he starts cyclophosphamide(chemo) next week which they hope will in turn help control the seizures.He had to go into hospital today to have a colonoscopy to investigate the inflamitory colitis however he had 2 seizures while there so they said it was too dangerous to go ahead with the colonoscopy so its a bit of a nightmare just now .Hope everyone is well take care Love M.x.

tgal
08-18-2011, 10:13 AM
I am so sorry Mary! The good news is that he is going to get some help so the seizures stop. I have seizures and I can't imagine having them that often. Please keep us posted and don't forget to take care of yourself!

MaryS42
08-28-2011, 04:55 AM
Hey Guys I was just wondering do any of you experience (cramps/cramping pains) Alans seem to be getting worse he mostly gets them in his hands they can be so severe that his hands locks out into a claw we were just wondering if anyone else gets this and if so do you think its lupus related its so hard to tell if its lupus or maybe the high dose steroids appreciate your thoughts on this.
Love M.x.

tgal
08-28-2011, 10:03 AM
Hey Guys I was just wondering do any of you experience (cramps/cramping pains) Alans seem to be getting worse he mostly gets them in his hands they can be so severe that his hands locks out into a claw we were just wondering if anyone else gets this and if so do you think its lupus related its so hard to tell if its lupus or maybe the high dose steroids appreciate your thoughts on this.
Love M.x.

That happens to me when my potassium gets too low. Sometimes I have to take magnesium along with potassium in order to keep my potassium from dropping. Hope that helps!

MaryS42
08-31-2011, 02:32 PM
Hi All well Alan had 1st dose of chemo today he had 2hrly bags of fluid then anti-sickness infusion then chemo then a further 2 bags of 2hrly fluid he had 3 seizures while at hospital it was a long day for both of us he's in bed now(he never goes to bed this early) normally however the sickness and diarrhoea have started. Hoping the side effects dont last too long and we start to see some progress with this treatment on the Lupus fingers crossed. Luv M.x.

MaryS42
10-02-2011, 03:04 PM
So 2nd Chemo is over with and have to say has gone better this time so far no seizure while at hospital however kicked off when back home no sickness but bad diahorrea for past few days but hey ho cant have it all good I suppose.Social work have finally organised respite for me dont know how i feel about it yet I think yes it would be great to get some time to myself but on the other hand i'll just worry about him if im not with him!!!! We'll see how it goes.Hope everyone is well take care luv M.x.

steve.b
10-03-2011, 12:46 AM
good to hear the social worker is going to give you a rest.
even if it is to go and get your hair done, or have a quiet coffee somewhere.

you do need time for you!!!

MaryS42
10-15-2011, 12:07 PM
Hi All so just another update Alan not doing so well the chemo still ongoing however Alan deteriorating rapidly.He's still having seizures every day between 3 to 5 and now nightly about 3 to 4 he is now completely unable to walk in doors he is having severe breathing difficulties he's been diagnosed with sleep apnea and is suffering severe cramping. So we're not doing so good just now praying that we get a reprieve soon.Hope you are all well take care Luv M.x.

tgal
10-15-2011, 12:20 PM
Hi All so just another update Alan not doing so well the chemo still ongoing however Alan deteriorating rapidly.He's still having seizures every day between 3 to 5 and now nightly about 3 to 4 he is now completely unable to walk in doors he is having severe breathing difficulties he's been diagnosed with sleep apnea and is suffering severe cramping. So we're not doing so good just now praying that we get a reprieve soon.Hope you are all well take care Luv M.x.

Mary i am sorry that things are going so badly for you. I have to ask a question. I am NO doctor so remember this is just a question from another sufferer. Have they tried upping his steroids? I have been going through a really bad spell with my seizures no matter how much seizure medicine I am on. I had to go off my steroids and plaquenil for a few weeks and the seizures came back in full force. It appears, for me , that the seizures are related more to inflammation in the blood flow system to the brain more then to an electrical problem such as epilepsy. Have the docs looked into that at all

steve.b
10-15-2011, 08:07 PM
thinking of you and alan.

(((HUGS)))

MaryS42
10-17-2011, 11:50 AM
Hi Mhari what you are saying sounds like thats what it could be so i will certainly ask the doctors to look into it.They have just reduced the steroids today from 50mg to 40mg but thats because he also got diagnosed with steroid induced diabetes today. All of his seizures till now he has been completely awake throughout them but in the last 2 weeks he has had 2 really violent one's where he has lost conciousness so they are changing now and they are getting more violent.He is also having more brain fog starting conversations but not finishing them then when you ask what he was saying he's arguing that he hadn't said anything in the first place or he asks a question then 2 minutes later he asks the same question but swears blind he never asked in the 1st place then when i convince him he breaks down crying he is so frightened with all this thats happening and its so frustrating for me to sit and watch and not be able to do anything to help.Luv M.x.

tgal
10-17-2011, 12:39 PM
Hi Mhari what you are saying sounds like thats what it could be so i will certainly ask the doctors to look into it.They have just reduced the steroids today from 50mg to 40mg but thats because he also got diagnosed with steroid induced diabetes today. All of his seizures till now he has been completely awake throughout them but in the last 2 weeks he has had 2 really violent one's where he has lost conciousness so they are changing now and they are getting more violent.He is also having more brain fog starting conversations but not finishing them then when you ask what he was saying he's arguing that he hadn't said anything in the first place or he asks a question then 2 minutes later he asks the same question but swears blind he never asked in the 1st place then when i convince him he breaks down crying he is so frightened with all this thats happening and its so frustrating for me to sit and watch and not be able to do anything to help.Luv M.x.

I am sorry that you are going through this. It is so hard to watch. My thoughts are with you

MaryS42
10-18-2011, 05:08 AM
Wee bit of good news for a change Alan won his appeal for DLA(disability living allowance) he has been told it will be back dated to Jan 11 which is fantastic news just wanted to share xxxx

tgal
10-18-2011, 06:07 AM
Wonderful news!!!! I am so happy for both of you

MaryS42
10-18-2011, 02:15 PM
Thanks mhari such a weight off our shoulders they gave him an indefinate award which is fantastic

steve.b
10-18-2011, 11:52 PM
as i said before......................
it takes a government department to really ###### things up.

i am glad someone saw sense in the end.

MaryS42
10-19-2011, 07:20 AM
Thanks Steve what a relief I can now get him his electric wheelchair and get a car with a ramp to take the wheelchair which will make make both my life and Alans a lot easier. Also this will ease the financial pressures (thank god) unfortunately Alan has been deteriorating rapidly these past few months and with these 2 recent diagnosis of sleep apnea and steroid induced diabetes this has really rocked him and he is very low at the moment but i know he'll pick up again he always does.Thanks to everyone for all the love and support Luv M.x.

MaryS42
11-12-2011, 01:14 AM
Hi All not posted for a while been very hectic due to Alans declining health.Thought id do a little update Alan not been great at all the seizures are still happening between 3 and 8 on a good day he couldnt get his chemo a few weeks ago because he had over 40 that day!!!! He has been diagnosed with sleep aponea and recently steroid induced diabetes.The good news is our social work department have finally organised some respite for me I now have a respite worker who comes in for 4hrs twice a week this is a god send! I also now have alarms all over the house and Alan has a wrist strap alarm also and we have a key safe outside the front door in case i am not around and emergency services need to gain access so things are all going in the right direction.Hope everyone is well take care M.x.

Nonna
11-12-2011, 02:33 AM
Hi Mary, thanks for the update. I just saw this thread and started reading. My heart and prayers for you and Alan.
(((((((HUGS))))))))))

steve.b
11-12-2011, 07:05 AM
i want to add my hug also.
i think of you two often.
i wish you some peace.
and alan a restful day.

tgal
11-12-2011, 08:19 AM
If the health situation isn't getting better I am simply glad that you are getting help in other ways. My thoughts are with you always

MaryS42
11-16-2011, 04:35 PM
Hi All dont know where to start we were told today that the hospital may have got it wrong with the biopsy result and he may not have Lupus afterall!!! They are testing him for a thing called shunt nephritis which apparently has most of the traits of Lupus especially on a biopsy result the only difference is with shunt nephritis the person will have an enlarged spleen and liver so they have done loads of blood tests today also blood cultures he's to go for a ct scan of his heart,liver and spleen . His kidney specialist decided to ask a proffessor to look at Alans medical notes as she was concerned that the seizures arn't giving up and also because he's been getting chemo for 4 months now and it hasn't helped at all if anything his kidney failure is worse since chemo started and she said it hasnt helped with the lupus either if it is in fact Lupus!! This proffessor has suggested that it could be this shunt nephritis and has asked for all relevant tests to be carried out basically to rule out shunt nephritis or confirm it or confirm it is definately Lupus its a nightmare.We are in complete shock to be honest as they have said if it is shunt nephritis he will need immediate open heart surgery as this is where his shunt(stent) is in his aorta (main artery in his heart).He has had 16 seizures today and im watching him fade before my eyes and i ask myself sometimes "why us" "why him" it breaks my heart to watch the deterioration in him and there's not a thing i can do to help him to ease his pain/suffering,will keep you all posted as and when the results of new tests come in . Love to all take care M.x.

steve.b
11-16-2011, 04:50 PM
you are always welcome here.

regardless of what they call alans problems, you are a "friend of lupus sufferers"
because you are my friend.

it may be confusing, but if they can help alleviate alans pain, let them test.

ialan has had it hard, if they can make his life easier, then good.

MaryS42
11-19-2011, 03:42 AM
Thanks Steve I really appreciate that we are hoping against hope that it is Lupus as we asked the consultant which one is worst and she said pray for it to be Lupus as he isn't well enough to face open heart surgery and if it is shunt nephritis the damage has already been done!!!! Anyway either way i will still be popping in now and again to see how everyone is doing and to keep you all posted on how Alan is doing. Luv M.x.

Nonna
11-19-2011, 05:40 AM
Hugs for you both and my prayers are with you

MaryS42
12-12-2011, 03:53 PM
Not been on for a while so thought id update....no change with the seizures Alan still having between 8 and 15 per day we still havn't had the necessary tests done to find out if its a mis-diagnosis of Lupus or if its shunt nephritis we hate being in limbo like this the not knowing is killing us.They have stopped the chemo till they find out whats wrong for sure so thats 1 good thing I suppose.We are dealing with the steroid induced diabetes but once again its been hard for Alan to cope with yet another health complication.Anyway thats as much as I can tell you all for now hope everyone is well and you all have a happy healthy(as can be) Christmas and New Year will say it just now in case im not back on Luv M.x.

E42brchick
02-28-2012, 08:39 AM
Thank you for posting this link! My Rheumy just referred me to a neurologist because I'm having a lot of neuro symptoms. This is really helping me understand what I am going through. Thank you