Re: How do get a diagnosis?

[Guest guest]

I was one of the lucky ones, I had a swollen lymph node, and they thought I had lymphoma, but as I was told at the time, lucky me, I only have Sarcoidosis, no problem, it won't even bother you, lol

Then 3 mos later I was having trouble breathing, found out it hit the lungs, steroids, remission, then lungs again, steroids, remission.  Then Systemic, rash on my whole body, next neuro, and they still had to rule out lupus, MS, and any other neuro disease, so like many even though I had a solid Sarcodiosis diagnosis, Finally said NS, I've been on years of steroids, in fact 3 years straight, until I went psycho, Then Plaquanil, methotrexate. and eventually Remicade, I am still on all 3 of those drugs, and they've helped a lot, in that I got my balance back, walking better, memory a little, but after 2 years of these drugs, I find that the disease is still slowly advancing. 

Now I hope there is some good news in there, and don't let the scary parts scare you, it's so different for everyone.  I have to say that I have very little problem with my eyes, when I'm really tired, they get blurry,  and there very dry, but I'm very blessed there.

However, the face, left side numb all the time, burns, sometimes all my teeth hurt so bad I want them pulled.  I have numbness all over, more on the left side.  I think I'm just rattling now so will shut up.  But I'm OK, I will never give up, never.  

Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

Hello Everyone,My name is and I'm brand new to the group. I joined because I suspect that I may have neurosarcoid. Almost ten years ago I developed symptoms of painful " pins and needles " on my face and head that were concurrent to periods of confusion and disorientation. I've also had " red rashes " on my face, loss of taste and smell, and other troubling signs warning of a possible neurological condition. 

Since 2001 I've seen a psychiatrist, two neurologists, and had a battery of neuropsyc assessments. Every diagnostic tool has returned results that were either inconclusive, or unremarkable. I wonder if anyone is willing to share their story of how they were diagnosed? I have read a considerable amount of material and can find no inconsistency between my symptoms and those experienced by neurosarcoid

sufferers. What tests should I be asking for to get an official diagnosis?Any insight anyone here can provide could be very helpful and would be much appreciated.Many thanks.

Chris