Patient Comments: Stiff-Person Syndrome - Treatment

Question:

What was your treatment for Stiff-Person syndrome? Submit Your Comment

Comment from: pattygail, 65-74 Female (Patient) Published: December 20

I am doing neurofeedback therapy for Stiff-Person syndrome and it helps control pain. I have been doing it for about 8 years.

Comment from: Noemi, 55-64 Female (Patient) Published: December 16

If you are diagnosed with stiff-person syndrome (SPS) I suggest you see a neurologist as soon as possible and get immunoglobulin and Valium immediately. I was informed by one specialist that if you start the treatment you could go into remission, but I waited 1 year to start the treatment even though I think I had the disease for 3 years. But the doctors didn't know what I had, they thought I had back problems and depression. Since I am a registered nurse I was hesitant to start the immunoglobulin for the side effects as well as the Valium, silly me. Maybe I lost my chance to go into remission like one of the doctors told me, but now I am taking Valium, baclofen, gabapentin, immunoglobulin and some anxiety medicines like Prozac and Buspar. I am feeling better after 10 years, you should do some meditation and exercise too. Good luck.

Comment from: The Stiff Guy :P, 19-24 Male (Patient) Published: December 10

I have stiff-person syndrome. There are several treatments. Some of them only for pain in muscles. Some of them are for solving the reason of the syndrome. For the pain they can use baclofen, Lioresal 50 mg and Apranax Plus. I'm using the last two. I also tried the plasmapheresis two different times. First one was feeling so good for 4 months, after which the symptoms were start to back. First plasmapheresis included 5 doses with 5 units of albumin at every dose. The second plasmapheresis included 9 doses with real human plasma with 20 units of plasma at each dose. The second one didn't feel good for very long, only for 1 month. But some researching shows that IVIG can be good choice for treatment. Soon I will talk with my doctor.

Comment from: concerned, 45-54 Female (Caregiver) Published: June 28

I have a friend who is Turkish and lives in Istanbul who has Stiff-Person syndrome (SPS) and they give him a very expensive immunoglobulin IV therapy about every 6 months through their universal healthcare system there. Insurance here does not cover it because it is considered experimental. You would no longer know he has it now, while most folks here in the US, end up in wheelchairs or at best assistive devices. These medications work and reset the nervous system.

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