stiff persons syndrome: stiff person syndrome.I... - Ataxia UK

Ataxia UK

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stiff persons syndrome

golfingsue
golfingsue

stiff person syndrome.I was diagnosed with ataxia 2 years ago but sheffield prof thinks i have stiff persons syndrome as my legs are getting so stiff.i am on Mycophenolate for 2 1/2 months now but made no difference at all but prof says it can take upto 6 months.Is there anyone else with the same diagnoses.or has anyone tryed intavenous Immunoglobulins for the same thing as i have been reading up about it.

5 Replies

I figured I had Ataxia. Ended up having been diagnosed Heridatary Spastic

Paraparasis.Just saying check all the options.Take it Easy.

Rob

Hi I have been diagnosed with stiff person syndrome along with Anti GAD Ataxia and Gluten Ataxia. I've been Gluten free now for nearly 7 months and have seen an improvement in my brain fog and tremors but the pains and stiffness are getting worse. I'm on Baclofen and gabapentin but not helping yet so probably have to have bigger doses. I also see Professor Marios Hadjivassiliou and live in Sheffield. Do you have anti GAD antibodies? Mine is 2000+.

not sure but will ask on tues when i see prof,is your really high & what does that mean,

It should be between 0 and 5 and he said mine could be 1000 because the the results don't go above 2000 so don't show how high. It is better if you don't have it because causes a lot of other autoimmune diseases. Good luck when you need see the professor he is so good my legs are the main place I get the stiffness but do feel some improvement in the last week.

My gad result was neg but prof says 40% of patients are neg but have to go on symptoms,I am taking baclafen,diazipan,I have been on Mycophenolae for 3 months but he says may need to be on it 6 to 12 months to see if it helps.no better at moment.What do you think has made yours improve.

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