Stiff Person Syndrome: Want to connect with others

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?

Hello Bryan, sorry about loss of job. I must stress the importance of filing for social security disability and recommend you begin the process asap. I was advised to do so by extremely reputable Rheumatologist shortly after my Dx of Fibromyalgia in 2011-2012. I was mortified. Well, after repeated untimely patient charting and absence due to dr. Appointments I was considered a liability and let go. Long story short, with continued decline, my boyfriend at the time applied for me. After years of appeals and appearing before judges in Savannah, Ga I was denied. This process is grueling and especially cruel for the disabled. I would be dead if it weren’t for my strong support system. Finally, after moving from GA to NJ with my boyfriend I obtained another lawyer and proceeded further. Fortunately, the NJ Judge overturned the GA Judge decision based on medical advisory not following medical protocol guidelines period. I must say it was eight +years of pure agony not knowing what if any future I had. I was misdiagnosed with MS, DX with SPS and Small Fiber Neuropathy the first year of moving to NJ. And of course 99.9 % of mds assumed I was crazy within minutes of meeting me. I must say they have learned a lot from me. I am my own advocate. It’s a full time job. In reference to your unintentional movement, yes, it happens to me. As a matter of fact I actually unintentionally threw my cell phone at an elderly lady in an Apple Store. Thankfully, she was not injured. My red face and damaged phone quickly departed. The worst of my symptoms I must say is being easily startled. I have come very close to causing heart attacks to those nearby when I’m startled. Afterwards, I have spasms in chest area causing breathlessness and severe fatigue. Finally, it’s imperative to rule many other Dx which mimic SPS. Elevated GAD-65 auto antibodies is definitely a significant factor to consider. I would highly recommend finding a neuro immunologist at University if possible. I was unsuccessful scheduling an appointment at all Mayo Clinic’s. Mayo Clinic advised appointments are completely booked throughout year and unable to book appointments for next year at this time. Lastly, I’m back in GA due to extremely high cost of living in NJ. I was told when I moved here that the ivig I was receiving for past year was not available. I was administered another brand which was extremely toxic to my liver. I’m now awaiting results from scans my oncologist ordered due to suspected SPS paraneoplastic kind. Due to insufficient Neurologic care in small GA town and surrounding areas I will be commuting to NJ Neurologist that never gave up on me. It’s imperative to find a trustworthy doctor that really cares, not one that just hands you prescriptions left and right. I wish you well. Let me know if I can help in any way.

Genevieve Howard-Lanier

To @peggi, I'm a patient. I'm doubtful of my EMG results as well. (I see your response to @nutmeg.) Before I had the first one, the doctor told me I don't have ALS, just looking at me, not even having had a neurological exam either. Then as the test began, he appeared to look really serious. It is tough to know if he was lying to me afterwards about it being normal because he didn't want to be wrong. I've developed a lot of distrust for neurologist after this because going for second and third opinions, I believe they rely heavily on the opinions of prior doctors. The second EMG at the same practice, but a different doctor, she kept reinserting needles into my back muscles until she found a good reading!! I figure I have to wait it out and go with the only understanding neurologists I found who went with the SPS because all the others seem useless. Or else go to experts in SPS at John's Hopkins and see what they believe about a SPS diagnosis.