Patient Comments: Stiff-Person Syndrome - Diagnosis

Please discuss the events that led to a diagnosis of Stiff-Person syndrome.

Comment from: Lynjay, 45-54 Female (Patient) Published: July 28

After 3 years of painful muscle spasms, I saw 3 neurologists, an internist and of course family doctor. I did all nerve tests and EMG and all were negative. The last neurologist then said I have Stiff-Person syndrome, even though I don't have all the symptoms. He ordered the anti-GAD65 test, also negative, but he insists this is what it is. My only symptoms are very painful spasms, and sore back.

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Comment from: DALK, 45-54 Female (Patient) Published: March 11

I went to the emergency room for sharp eye pain and headache. They admitted me and did testing. While there, I developed stroke like paralysis on the left side. They put me in rehabilitation for two weeks. I still have weakness on the left side. Four years ago I quit swallowing, and I have stiffness in my limbs and hands, and feet spasms and shakes. I have double vision, they say it is the nerves, and autoimmune problem. I have periods when I'm not able to move my feet. I have low blood pressure due to the muscles being too weak. I went to neurologist and he said I had Stiff-Person syndrome and put me on baclofen and Topamax; and left me hanging.

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Comment from: papaallen, 55-64 Male (Patient) Published: May 07

I went the route calling my stiff-person syndrome everything else. Finally they did a special EMG test that showed stiff-person way of misfiring, so quick movements are difficult. Plasma exchange tube blocked so I ended up in ICU for five days. Now I have a baclofen pump in and they are increasing by 10 percent and at 451 at present. I am still falling, still in spams but most do not see real results till they are up to about 1500 range as everyone is different. My hands, legs and the rest of me are affected. But I am also reminded of a poem - I once felt bad for I had no shoes till I met a man who had no feet. No matter how bad we think we have it someone has it worse.

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Comment from: C. Encalade, 45-54 Female (Patient) Published: April 13

I just found out that I have stiff person syndrome. Three weeks back, after 13 years. I was told I had ALS (amyotrophic lateral sclerosis) and a B12 deficiency in 2 different hospitals. Every hospital I go to I would tell the doctors that. And they would only tell me they had never heard of B 12 not letting you walk, but no one would do anything, until I saw a doctor in Mississippi. Now I trying to walk again.

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Comment from: solo, 55-64 Male (Caregiver) Published: March 18

My partner was diagnosed with Stiff Persons Syndrome in 2010 after suffering a fall. He had muscle spasms triggered by noise, spasms changed to seizures, which of course affected his heart which is the largest muscle in the body, which ended in heart attack and CRP and ICU treatment for three weeks. He is now being treated with baclofen, clonazepam, prednisone, and azathioprine. He put on a large amount of weight as a result of the large amount of prednisone but has been able to lose weight, due to being able to swim each day. His medication is overseen by the neurology team for which we are very thankful.

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Comment from: Petunia, 25-34 Female (Caregiver) Published: May 05

My mom has Stiff-Person syndrome. She is taking medication for that (diazepam). Problem is she sometimes doesn't get the medication from the hospital which makes her very sick and she is now taking medicine for epilepsy which doesn't help. She would have seizures more than 3 times a day and doctor doesn't admit her to keep her under supervision.

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Stiff-Person Syndrome - Symptoms Question: What were your signs and symptoms associated with Stiff-Person syndrome?
Stiff-Person Syndrome - Treatment Question: What was your treatment for Stiff-Person syndrome?

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