Stiff Person Syndrome: Want to connect with others

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).

My GAD Ab result was 1,451 at UW Madison, with their normal range <=0.02; and a normal EMG. I do not have any pain whatsoever, no muscle spasms, no startle reflex, no muscle weakness. I REALLY stiffen up when out in the cold, which was never a problem for me before. I used to love skiing, skating, sledding, etc.

I DID have both knees and both hips replaced due to osteoarthritis, and that’s where my thoughts went with the onset of these symptoms — a possible reaction to all of the artificial components in my body. The medical specialists don’t think there is any correlation. Have any of you had joint replacements?

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@peggi

My GAD Ab result was 1,451 at UW Madison, with their normal range <=0.02; and a normal EMG. I do not have any pain whatsoever, no muscle spasms, no startle reflex, no muscle weakness. I REALLY stiffen up when out in the cold, which was never a problem for me before. I used to love skiing, skating, sledding, etc.

I DID have both knees and both hips replaced due to osteoarthritis, and that’s where my thoughts went with the onset of these symptoms — a possible reaction to all of the artificial components in my body. The medical specialists don’t think there is any correlation. Have any of you had joint replacements?

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Whether others have experienced any possible relationship between joint replacements and SPS is a topic you might also consider posting as a new discussion/query in the Joint Replacements group on Connect, @peggi https://connect.mayoclinic.org/group/joint-replacements/. If you need any tips on how to start a new discussion, see the instructions on it on the Getting Started with Connect page https://connect.mayoclinic.org/get-started-on-connect/.

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@bryan_in_dallas

Uh my gosh! I had no idea something like that could even happen. A few weeks back, I Googled to find out info on SSDI, and entered my email for future newsletters. Immediately after that, I started getting emails from a law practice out of New Jersey (I’m in Texas), who says they specialize in it. I’ve been saving, but ignoring, their emails; just assumed this can’t be that difficult. Now you’ve got me really concerned. The way I feel and the way my health has gone down hill, I honestly wouldn’t surprised if I’m dead in 8 years. So I’ve had a successful career and have paid over the max required for “full benefits” which I believe are around $2950/ month for me and half r 3/4 of that in addition for my wife and high school aged daughter. That’s not very much money in the grand scene of things. What kind of fees did the lawyers charge and how were you able to pay them? Thanks so much for the advice. I’m definitely coming to the conclusion I need to start this process ASAP. Bryan

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Pardon me for the late response. I’m still in the process of learning how and where to ask or respond. This is a daily process for me period. In reference to unsolicited New Jersey or any unsolicited Attorney emails, my recommendation would be to delete them all. Fortunately, my initial NY attorney did not show for my NJ Hearing. If he would have, he would have ended up with over 30% of my back pay & more. Come to find out there are many vultures out there preying on helpless, vulnerable disabled people. Fortunately, an attorney at my hearing overheard my circumstance & agreed to meet me at my home address a few days to review my case. She was able to dismiss my previous attorney whom would have charged exorbitant amount and resume my case with max amount of $6,000, which was deducted automatically from SSD backpay. From what I understand 6,000 is limit Judge will allow to be deducted. Legitimate Attorney will not charge you if your case is denied, which it will most likely be time and time again. At this time the system for applying for benefits is setup in such a complex, time consuming way, most just give up or die waiting. Your local Social Security Ofc should supply you with list of legitimate Attorneys in your area. Regardless, be sure to read the fine print. Lastly, do not give up, Keep good notes, a daily journey is a must. Finally, keep your head high and know there is a light at the end of all journeys. Hope all is well your way.

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Thanks so much for all the information. Considering between me and my employer, I’ve paid SS over $380K, and I could technically retire in 5 years, this is really disheartening to hear. I do appreciate hearing your story, though, so I’m more reaped for what’s ahead. Have a great Thanksgiving holiday. Bryan

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@suzanneleafbrock

So sorry to hear all this. I work at Mayo Clinic and my husband was diagnosed at Mayo Clinic in Rochester, Minnesota. That is actually where this condition was first identified and one of the key diagnostic tools is a blood test. My husband did not find baclofen to help, and is on a variety of meds, including neurotin. He tried plasma exchange as an experimental treatment, but that did not help him. Everybody responds differently to meds and treatments. He finds keeping his back really warm helps him, so he wears lots of jackets all the time, even in the summer, he wears fleece sweatshirts. As for dystonia, he does not have that, but a dear friend does and has turned to alternative medicine for much of her support to try to strengthen her neck, etc. She wears a neck brace that helps a lot. I have not heard her mention botox injections and I would have expected she would have told me if she had tried that. I am guessing that placement of those injections can make a difference, similar to when a steroid injection is given for a bad knee, it has to get put in the right place to really help. I am not a doctor or any type of professional care giver and what I’m saying is not anything official from Mayo Clinic. I just happen to work there, in the communications department. All the best and happy to talk more if that helps.

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Which blood test?

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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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@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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