Patient Comments: Stiff-Person Syndrome - Diagnosis

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

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

I am a registered nurse, and they gave the tetanus shot after an accident. I believe the signs and symptoms of stiff-person syndrome (SPS) came after that shot. I was not even due for the shot, I had patients with tetanus and this disease is very similar. I am trying to research after so many years of considering this possibility. I am feeling better now with Valium, baclofen, immunoglobulin, anxiety medicines, and gabapentin. All these medicines I worked with my doctor to get. I tried to decrease the Valium but I ended with severe stiffness and pain; I walk with a walker, but I am still thinking the tetanus shot messed me up. Nobody is doing anything for this disease and a lot of doctors and nurses don't know about it either, I included. In my 35 years of experience working as a nurse I never had any patient with SPS, but I had patients with tetanus.

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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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