Stiff Person Syndrome: Want to connect with others

Hi. I am a spouse of an sps patient in Ohio. There are a whole 4 people diagnosed in ohio and very few docs who have heard of disease. Mybhubs was misdiagnosed for 10 years based on his Job and age. Finally at 33 and losing feeling of his legs and looking like he was having a seizure an old school neurologist did sps panel thru Mayo clinic and it came back positive for very high levels of antiglycin antibodies, a low but positive gad 65 level, they did a spinal tap and it was negative for everything. His spasms in the last 2 years have now spread to jaw neck spine and chest muscles, he is 6ft tall and now only weighs 124# due to spasms affecting his gut. His pcp does an old school muscle relaxer, pain meds, diazapam aspirin and pantoprazole. Nothing has worked and no doc in ohio will do ivig or plasmapheresis so we deal with life every day at a time. It's affected myself and our kids. As a nurse, I have to fight with every doc we come into contact with because of how rare the disease is.

Hello, my partner was recently diagnosed with SPS and I would really appreciate having someone to talk to. I feel pretty lost and confused.

@amandayounts14 you have 2 patients with SPS?
That’s amazing since it’s so rare!

So, someone who is elderly with Alzheimer’s, and SPS will need nursing home care. I am stunned…

I wouldn't have any expectations about staying home alone. I have 2 patients with it, and they are total care. One of them has to eat pureed food by his wife and cannot drink without aspirating. Also he cannot talk. His body is rigorous. If you can get on IVIG, sooner is better than later. Good luck

@sheeva888 I got an appointment with a movement specialist neurologist for September. I’m very happy about that.

However, this SPS is only one of 3 diseases I have that are going to put me in a nursing home.
Since the beginning of this year I have been diagnosed with Alzheimer’s (mild), Ataxia, and now this.

I’m almost 75, and live alone (I love it). I have a social worker who is guiding a bit, and 1 son who is trying.

Ha! Being in warmer climates definitely seems helpful for SPS patients but the sun doesn’t penetrate the muscles like other heat modalities. Some people find Botox injections and/or acupuncture are helpful, but they don’t work for me. You probably need a diagnosis for Botox but not for acupuncture.

FYI-My EMG was negative and my GAD 65 was negative, so I was initially diagnosed with atypical, classical SPS. Basically I exhibited all of the symptoms and responded to Valium. Many other conditions were ruled out and tests were negative. But I am now positive for GAD. My level was 0 in 2019 at diagnosis and is now 230 (Elisa test).

Hi,
Have you checked out clinicaltrials.gov to see if there is anything active he qualifies for? I know a SPS patient that just went through a stem cell trial in Colorado. I have heard a few others are possibly signing up. I don’t know where you live, but my neurologist has been doing research on some alternative IV therapies for patients not responding to the typical ones you listed. He used to work at the NIH. He does see patients from other states for 2nd opinions.

@sheeva888 I just re-read your list again. I checked our weather for the week, and it will be between 104-109 degrees. I could just sit on the patio for the light and heat therapy!
Kidding aside, I have inflamed arteries (Vasculitis), and fibromyalgia. Some of the things wouldn’t work for me unfortunately .

@ellenanne33
I am so sorry to hear about your husband.

Neurologists who specialize in movement disorders have a 7 month wait for an appointment…I’m stunned! I can’t wait that long…

All therapies have not help my husband 1st responder fdny on 9/11 and plance crash soon after that went down in the rockaways queens ny .he has has ivig ,plasmapharesis ,rituxamab and last cytoxan only to have multiple pneumonias and sepsis and now back in hospital for clots in lungs .any help out there .much appreciated as nyc has been no help at all !!