Stiff Person Syndrome

Posted by Suzanne Leaf-Brock @suzanneleafbrock, Jul 5, 2011

Am interested in connecting with people who have this or are significant others of people who have this condition. (I’m in the latter group).

Liked by mcrchicago

@aknitag

Hi.. my husband has Stiff Person syndrome.. diagnosed about 2 yrs ago.. he had been having problems swallowing and charlie-horse type spasms mostly in is neck and over his rib cage… he has the raised GAD, was confirmed… also.. in checking out the spasms/chocking on food, they did MRI that accidentally discovered a brain tumor just behind and between his eyes (size of golf ball), meningioma non cancerous.. had that removed successfully in April of 2018.. He is on valium and gabapentin.. Some days are good and some days are bad.. I was wondering if stiff-person syndrome is related to some other brain disorders.. I know that ALS, alzheimers, parkinsons are nerve degenerative disorders and treatment with L-serine is now under clinical tests that look very promising… Does anyone know if this could help stiff person?

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Hello @aknitag, welcome to Mayo Clinic Connect. Thank you for being a strong advocate for your husband's health and searching for answers. It's good to hear that he has good days along with the bad ones. I'm hoping someone more knowledgeable about stiff person syndrome can provide some information on your question is it related to other brain disorders. It does seem like it's likely but I have no medical background or training. Here are a few links that may provide some answers for you.

Stiff-Person Syndrome Information Page — https://www.ninds.nih.gov/Disorders/All-Disorders/Stiff-Person-Syndrome-Information-Page

9 Studies found for: Stiff-Person Syndrome — https://clinicaltrials.gov/ct2/results?term=Stiff-Person+Syndrome

Have your husbands doctors suggested any other treatments or therapy?

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@peggi

I had my appointment with the neurologist at UW on Thursday, and she increased my IVIg to every 6 weeks. Hopefully there will not be another shortage.

No: My only symptom is loss of balance especially when walking outdoors: slants, curbs, gravel. I can walk 3 miles in 45 minutes with the use of walking sticks though. No pain. No startle reflex. If I stop to chat with someone, though, I am really stiff until. I walk a few steps though. Oh! And being cold really causes me to stiffen up. I feel like a statue.

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Hello @peggi
I am from Wisconsin also diagnosed with SPS in 2012 and I am getting progressively worse. I currently go to SSM Health. Would you be willing to share who your doctor is at UW? My insurance covers both. I am looking for a specialist not just a neurologist. Thank you, Michelle

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@hsmith801

I’ve had symptoms since early 2016. I have overwhelming stiffness that affects my back, lower legs, and feet and also have muscle weakness. I thought ALS, but had normal EMG tests. I tend to think it could be Primary Lateral Sclerosis, which affects the upper motor neurons rather than ALS (which affects both upper and lower). Often PLS can turn into ALS. PLS can also take years to diagnosis. In late 2017 my neurologist went with SPS based on really high GAD65 blood test (and am being treated with Valium and baclofen). It was over 3000, when normal is 0 to 5. Does anyone else have a SPS diagnosis with normal EMG, but high GAD? I don’t suffer from the extremely painful spasms that are often attributed to SPS. I think my symptoms point more to motor neuron disease, though i’d much rather have SPS. I have mild muscle cramping. I’m not sure if I should go to John’s Hopkins or wait it out and see how it progresses.

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Hello @hsmith801
I have the exact same symptoms you do. With an extremely high GAD 4350. I was diagnosed in 2012 and my symptoms have progressively gotten worse but I do not suffer from painful spasms and cramping is minimal. My main issue is difficulty walking. Stiffness, muscle weakness. I would suggest treating it aggressively now and not waiting till later. I am not a doctor that is just my opinion.

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@michellewi

Hello @peggi
I am from Wisconsin also diagnosed with SPS in 2012 and I am getting progressively worse. I currently go to SSM Health. Would you be willing to share who your doctor is at UW? My insurance covers both. I am looking for a specialist not just a neurologist. Thank you, Michelle

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Hi @michellewi and welcome to Mayo Clinic Connect. I see that you've been living with Stiff Person Syndrome since 2012. I'd like to bring in fellow members @peggi @hsmith801 @suzanneleafbrock @speechless623 @njgenevieve and @aknitag into the discussion. Peggy and Suzanne may be able to suggest SPS specialists in the Wisconsin area.

Michelle, you mentioned trouble walking. What are you able to do to maintain mobility?

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Hello @colleenyoung My mobility varies from day to day. I need assistance walking in any open spaces. I wish I could say I do something to help maintain mobility but I basically try to make it through the day without having to hug the wall or asking for someone's assistance. It is purely stiffness that makes it unsafe for me walk for fear of falling. I have range of motion in my legs when I am in my home, I do stretches in the morning and at night. And I do this because it makes me feel good not so much for mobility. I have not had a lot of guidance with managing this disease accept for medication. I was trying IVIG until my insurance denied because of lack of randomized clinical trials. I have not had it in over 18 months. IVIG seemed to help me at lower doses to return to my normal.
I appreciate you inviting others into the conversation.

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@colleenyoung

Hi @msdee004, welcome to Connect. We look forward to getting to know you. Do you have stiff person syndrome?

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yes

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In reply to @suzieflynn "yes" + (show)
@suzieflynn

Hi @suzieflynn and welcome to Mayo Clinic Connect. I look forward to getting to know more about you. What treatments have you had or medications do you take for stiff person syndrome? Do you fall frequently?

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@suzieflynn

Does anyone know what my path moving forward is going to be? Im going to do infusion and a muscle relaxer. My doctor has never treated this. So I feel Im on my own. Thanks

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Good morning and welcome to Connect..Here is a discussion group about Stiff Person Syndrome (SPS). What is the infusion that you will be getting? Is your physician a rheumatologist?
I, too, felt alone when I got my diagnosis because no one in my town had even heard of it. My brother in law, a toxicologist, sent me an article from a neurological journal that I made copies of and gave to doctors. Never hurts to do research and be your own advocate. I’m sitting here now, getting my infusion of rituxan, my wonder drug!
https://connect.mayoclinic.org/discussion/stiff-person-syndrome/?pg=7#comment-388249

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@suzieflynn

Does anyone know what my path moving forward is going to be? Im going to do infusion and a muscle relaxer. My doctor has never treated this. So I feel Im on my own. Thanks

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@suzieflynn here is another website that may help you. Stay strong
https://my.clevelandclinic.org/health/articles/6076-stiff-person-syndrome

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Does anyone know what my path moving forward is going to be? Im going to do infusion and a muscle relaxer. My doctor has never treated this. So I feel Im on my own. Thanks

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@becsbuddy

Good morning and welcome to Connect..Here is a discussion group about Stiff Person Syndrome (SPS). What is the infusion that you will be getting? Is your physician a rheumatologist?
I, too, felt alone when I got my diagnosis because no one in my town had even heard of it. My brother in law, a toxicologist, sent me an article from a neurological journal that I made copies of and gave to doctors. Never hurts to do research and be your own advocate. I’m sitting here now, getting my infusion of rituxan, my wonder drug!
https://connect.mayoclinic.org/discussion/stiff-person-syndrome/?pg=7#comment-388249

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Thank you so much The infusion won’t start until at least next week because they have to have a pre-authorization from my insurance so I just don’t know what to expect did you lose your eyesight in my left eye or movement

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@michellewi

Hello @peggi
I am from Wisconsin also diagnosed with SPS in 2012 and I am getting progressively worse. I currently go to SSM Health. Would you be willing to share who your doctor is at UW? My insurance covers both. I am looking for a specialist not just a neurologist. Thank you, Michelle

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I’m looking as well

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@michellewi

Hello @colleenyoung My mobility varies from day to day. I need assistance walking in any open spaces. I wish I could say I do something to help maintain mobility but I basically try to make it through the day without having to hug the wall or asking for someone's assistance. It is purely stiffness that makes it unsafe for me walk for fear of falling. I have range of motion in my legs when I am in my home, I do stretches in the morning and at night. And I do this because it makes me feel good not so much for mobility. I have not had a lot of guidance with managing this disease accept for medication. I was trying IVIG until my insurance denied because of lack of randomized clinical trials. I have not had it in over 18 months. IVIG seemed to help me at lower doses to return to my normal.
I appreciate you inviting others into the conversation.

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what meds are you taking?

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@colleenyoung

Hi @suzieflynn and welcome to Mayo Clinic Connect. I look forward to getting to know more about you. What treatments have you had or medications do you take for stiff person syndrome? Do you fall frequently?

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low dose baclofen 5mg pt and waiting for infusion

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