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.
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
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.
Originally Posted by MaryS42
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!
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.
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.
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
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!
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
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.