Stiff Person Syndrome: Want to connect with others

@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 !!

@sandra319 I’m desperate to compare notes with someone who has been officially diagnosed .

This is what has be happening to me. If I feel the least amount of anxiety, or stress my neck tightens, my entire arm, hand and fingers spasm very quickly. The spasms spread to my other arm, neck, lower back, both legs, and down to my toes. Sometimes my head starts to shake too.
The most fearful time is when I have been standing usually in one place and my back tightens up and becomes very painful. At that point, I MUST SIT DOWN. Terrible pain that causes my voice to change as I cry out. Of course the spasms sometimes don’t show up. After an attack, I am totally exhausted.

Does this sound familiar?

That sounds very unpleasant. I am sorry you had to endure that. Spasms are so incredibly painful and scary. It’s a long list of tools in my toolbox, but without a diagnosis you won’t have access to a lot of my tools. In the interim, most SPS patients find heat to help. Heating pads, hot tubs, saunas, hot baths, infrared sauna bags to use in home, etc. Also Tylenol and THC (if you are open to that) if you have not been prescribed Valium yet. Low stress, quiet, and lower lighting help. Sometimes light stretching. Heated massage guns, if tolerable. Massage therapy, light or deep depending on what your body can handle.

Try to keep a journal of symptoms and take videos and pictures as things happen.

I hope this helps and the new doctor can get you a proper diagnosis.