STIFF PERSON SYNDROME

[peach50]

HAS ANYONE BEEN DIAGNOSED WITH SPS 9STIFF PERSON SYNDROME?) I WOULD LOVE TO HEAR FROM SOMEONE ELSE WHO HAS THIS DISEASE. I WAS DIAGNOSED WITH SPS IN DEC. 2006.

[leo2012]

stiff person syndrome

Me too, although I've had it for over 23 years ... dx'd w/MS at age 37. Dx' d w/stiff person syndrome few months ago , now 51yrs.  Also suffering from severe joint pain, heart failure, atherosclerosis, brain plaques on brain from MS, affecting memory, cognitive ability, concentration, focusing, raynauds disease , walking, speech, and EXTREME PAIN....to name a few of about 13 diagnosis...

Diazapam and 10-20 mg prednisone a day and other muscle pills, along with pain patches, has made a big difference in stiff person syndrome,,muscle pain, etc., has really made life easier for past six months,but diazapam is getting less effective and steroids also...i think the Dr wants to start, cellcept and eliminate diazapam nd steroids....after having such relief finally,after so long.. I am afraid.Also of the side effects of cellcept and having massive pain returned.

But which side effects are going to be worse?  Preds or cellcept.

I will research and let you know,.

There are other drugs,
but with heart and clogged arteries,
i am not a candidate...


Hang in there. Advil helps. Tons of it, Percocet if you can find a Dr who will write it,..... and pray!  

I'll pray for all of us. Also check out the lady Dr at John Hopkins.

That is my next step, such a rare disease..she treats many sps patients.

Leo

Your posts are old. Anything newsworthy going on I should know about?


Thanks!

[loup]

I was just diagnosed with it.