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MaryS42
02-20-2012, 11:56 AM
Hi guys
well as the title says im back after several months of questions tests and more tests it has been confirmed Alan definately has Lupus not shunt nephritis!!! However as a result of all the tests they have done they have discovered he has an enlarged right side of his heart.So we are going for tests now at Cardiology to find out if this is due to Lupus or not!!! He is still having seizures more or less on a daily basis although not as many as he was having some days he can have 11 some just 2 or 3. Since I have been last on he has also been diagnosed with steroid induced diabetes! Insulin dependant. So the next plan of action is to start 6 month course of chemotherapy he already had 3 infusions which didnt seem to be helping and his kidney function has dropped to 26% so not so good on that front.Hope you are all well .
Take Care Mary xxx

steve.b
02-20-2012, 06:20 PM
welcome home.
i am glad you have come back.
i was worried about both of you.

Saysusie
02-20-2012, 09:16 PM
I am so glad that you are back, but I am sorry to hear that Alan has been diagnosed with Lupus. As you said, however, it was a good thing that they discovered the issue with his heart very early that treatment can be started in order to reduce the enlargement,
Now, he also has to deal withe diabetes and insulin..it has been a difficult time since we last heard from you. As you know, we are always here for you and I am keeping you and Alan in my prayers.

Peace and Blessings
Namaste
Saysusie

MaryS42
02-21-2012, 06:52 AM
Thankyou both for the welcome back its good to be back these past 6 or so months of not knowing if it was Lupus or Shunt nephritis has been hell to say the least.The deterioration in Alan has been rapid however that could be down to having no Lupus treatment while they carried out all the tests which is why they are keen to start chemotherapy as soon as possible. We seen yet another neurologist yesterday who still says the seizures are being brought on by trauma and stress and we've certainly had our fair share of those but there again I should be having them if its stress!!! My dad has come through his cancer treatment however his dementia is getting worse as is my mums I am also going into hospital on Thursday to have tests done for possible bowel cancer!!! next week i have to go for a mamogram as i have a family history of breast cancer (my sister died age 37yrs) . On a lighter note I now have respite workers who come and take care of Alan for me for 4hrs twice a week and as of next week it'll be 8hrs twice weekly this has been a godsend and the respite workers are lovely and Alan gets on well with them which is good.
Take care all M.x.

MaryS42
02-21-2012, 06:53 AM
How are things with you Steve have you been keeping well?

tgal
02-21-2012, 08:51 AM
Welcome back Mary. I am so glad that there has been progress with your husband. It sounds like there is still a long way to go but at least you are over the first hurdle. Please keep us posted

steve.b
02-21-2012, 05:25 PM
How are things with you Steve have you been keeping well?

i will send you a message,

i have had my share of "fun"

MaryS42
02-22-2012, 10:22 AM
Hi Guys I am looking for advice if any of you can help! Do any of you know if trauma can trigger Lupus as we have looked into it all and even Alans Rheumi has said he does not pose as a typical lupus patient in his words Alan is male not asian has only had 1 positive ANA in 5yrs has no family history of Lupus. However I have been reading that things such as Trauma,Stress,Injury and Infection can cause Lupus.As most of you know Alan was involved in a motorcycle accident in Nov 06 he sustained alot of trauma and injury(broken neck in 2 places,smashed left leg,tore a hole in aorta,broke both hands ) 6 months later he developed septicemia and nearlly died it was during this time that Alan tested Ana positive this is the only time he has tested positive.Basically Alans kidney specialist is trying to tell us Alan was always going to develop Lupus regardless of whether he had this accident or not we disagree as Alan was a big fit healthy man heavily into sports etc never off work ill etc and only after this accident did he develop any problems any advice greatly received. Thanks Mary

tgal
02-22-2012, 10:25 AM
Hi Guys I am looking for advice if any of you can help! Do any of you know if trauma can trigger Lupus as we have looked into it all and even Alans Rheumi has said he does not pose as a typical lupus patient in his words Alan is male not asian has only had 1 positive ANA in 5yrs has no family history of Lupus. However I have been reading that things such as Trauma,Stress,Injury and Infection can cause Lupus.As most of you know Alan was involved in a motorcycle accident in Nov 06 he sustained alot of trauma and injury(broken neck in 2 places,smashed left leg,tore a hole in aorta,broke both hands ) 6 months later he developed septicemia and nearlly died it was during this time that Alan tested Ana positive this is the only time he has tested positive.Basically Alans kidney specialist is trying to tell us Alan was always going to develop Lupus regardless of whether he had this accident or not we disagree as Alan was a big fit healthy man heavily into sports etc never off work ill etc and only after this accident did he develop any problems any advice greatly received. Thanks Mary

Yes, trauma can trigger AI diseases such as Lupus. It actually takes a trigger of some kind and, although we are not sure what all the triggers are, we do know that trauma is one of them

steve.b
02-22-2012, 09:29 PM
mary, as mari has said, lupus usually requires some form of trigger to set it off.

being fit and healthy does not exclude people from lupus.

other males i know of on this forum, have been healthy and have lupus.
i was a heavy duty mechanic, working on big mining machinery.
rob is ex military, his fitness was extreme.
there is a current member (i cannot remember his name), who posted about there fitness level as a motivation to others.

i know this may not be the news you wanted to hear, but it is a fact that extrememly fit people has developed lupus.
the doctor is missguided by saying alan is male and not asian, therefore he is not a typical lupus patient.
there is tens of thousand of americans with lupus. they are not asian either.
about 10 % of all lupus patients are male.
10% is typical.

many people increase there stress levels trying to find a reason for there lupus.
unfortunatelly it is not always possible.
please accept my cyber hug.
and please do not worry about what you cannot solve.

MaryS42
03-09-2012, 03:37 AM
Sorry guys but it seems i am going to be constantly asking questions as i cant seem to get answers from the doctors over here firstly do most of you receive your lupus treatment from a rheumatoligist or nephroligist in Alans case he is nephroligist as he has cronic kidney disease this we are not happy about as she has told us she doesn't know a lot about lupus we think he should be getting any treatment and advice from the rheumi do you agree? Next question what do you know about shunt nephritis ? To explain Alans rheumi and a rheumi professor are not certain if Alan actually does have Lupus even thought the shunt nephritis test was negative they are still not convinced Alan has had 1 ANA positive result back in 2007 when he was in hospital with scepticemia EVERY ANA test since then has been negative!!! however what they've said is although all the ANA are negative he has (low compliment) levels im not a doctor so don't know what this means! The reason we are having a problem with all this is because as you all know Alan had a motorcycle accident in 2006 and we are still waiting for his compensation case to settle what Alans lawyers are trying to establish is : was the accident the trigger that caused the lupus or does he actually have lupus ? they think its still shunt nephritis and if it is they can say that he wouldnt of got shunt nephritis if he hadnt of had the accident this they say will boost his compensation claim however if its lupus the lawyers we are fighting are saying regardless of whether Alan had had the accident he was always going to get lupus and this would significantly reduce his claim. Honestly Alan and I are sick of it all we just want to know whats wrong with Alan and get him the best treatment possible and get on with our lives without having a court case hanging over us for 5 and a half years Alan is deteriorating rapidly every day he is still having daily seizures which the neuroligist says are being brought on by stress!!! All advice greatly received thanks Mary.x

steve.b
03-09-2012, 10:27 PM
sorry i cannot answer maby of your questions, but will help on some.

any doctor can treat a lupus patient. but a rhuematologist is supposed to specialise in this type of problem.
most rhuematologist only believe in black or white...... but lupus lives in grey.

ana stands for anti nuclear antibodies.
the number is the amount of times a sample can be diluted and still see antibodies.
to not have a positive ana means that they could not see anti bodies in the blood sample.
some doctors say... no antibodies - no problem.
unfortunatelly this is not the case.

nobody can explain why we get lupus.
it is believed, (but not scientifically), that an event needs to happen to trigger off the imbalance that causes lupus.
this is to say that it requires a specific event to force the body's immune system to be jolted before it starts attacking everything. nobody can say what this event will be, or how severe the event must be.

the lawyers will use this ambiguetty to there advantage. your lawyers would be saying that without the accident, alans body would still be normal. the insurance lawyers would be saying that any significant event would have caused this, it is imiterial to the case.

unfortunatelly when lawyers are involved, there is no personal dignety, we are pawns in there game.
it is about what can or cannot be argued.... not what is decent or fare.

MaryS42
04-23-2012, 04:31 AM
Hi guys

Well once again the Lupus diagnosis was put into question and once again we had to go through lots and lots of tests and the end result is Alan doesn't have Lupus however he does have Glomerular nephritis the question was what caused Alan to contract Glomerular nephritis ie:Lupus they have now decided nothing caused it he's just been really unlucky to have it and the treatment will remain the same chemo and high dose steroids .Hope everyone is well . Love M.x

steve.b
04-23-2012, 06:33 AM
sorry you have had the run around.
does this change the outcome for alan?

is there any hope that the seizures will be sorted out?

MaryS42
05-02-2012, 12:43 PM
Hi Steve no it doesn't change the outcome this disease there is no cure for either as i said they will treat it with chemo and steroids and the end result will be complete renal failure and with this disease a transplant wont do any good so we're in a state of shock AGAIN!! The seizures we are learning to control through distraction techniques as we met with a fantastic neurologist called Jon Stone who has diagnosed Alan with disasociative disorder/movement disorder/ so he has taught us to distract Alan when he has a seizure it doesnt stop the seizure but we're learning to ease them a little he's certainly not having as many as he was which is good . Im not sure how things go on WHL but i would still like to keep in touch from time to time to see how you are all doing i hope this will be ok to do so but i understand as Alan has had his Lupus diagnosis retracted that this might not be possible but i hope its ok. Hope you are keeping well how are the brain fog spells now? Love M.x

magistramarla
05-02-2012, 05:06 PM
Hi Mary,
You are always welcome here - once a cyber family member, always a cyber family member. Many of us have gone through being un-diagnosed and then have been diagnosed again. Also, many of us have overlaps of several AI diseases - it's all part of the package.
I hope that Alan is doing better and I'm glad that you are learning how to deal with the seizures.
Keep us informed.
Hugs,
Marla

steve.b
05-02-2012, 09:45 PM
mary,
friends of lupus patients are always welcome.

you are my friend!!!!!!!!!!!!!!!!!!!

so you are welcome.
please keep us updated on you, as well as alan.
how are your 3 meals a day comming along lol.
(i dont forget) but hopefully alan will, no this one atleast.