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
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.
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
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?
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
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.
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.