Stiff Person Syndrome: Want to connect with others

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

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.

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.

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?

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.

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

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?