One rheumatologist seem to think I have stiff person syndrome.

@houstor60 Welcome to Mayo Clinic Connect! You’ve come to the right place. The members here are very helpful and caring. It sounds like you need a good diagnosis. Are you seeing doctors at your local hospitals? You may need to go to a comprehensive medical center or university teaching hospital. My husband did just that when no one could figure out what I had. The operator who took the call, asked lots of questions and figured out that I should be seen in the neurology department. So, at 0615 I was picked up from the hospital and driven to the university hospital where I still get my care. So try it, you have nothing to lose.
Here is a good article for you: https://www.hopkinsmedicine.org/health/conditions-and-diseases/stiff-person-syndrome-sps
How long have you been dealing with these symptoms?

The spasms in my legs and chest area started over 20 years ago; but they rarely happened. and when I would get in a tub with hot water caused the spasms in my stomach and chest area the spasms in my leg happened every now and then. Within the last 4 years the spasms in my legs happened everynight; heating pads would help the spasms after being pressed against my legs, arms and or chest area; it may take 10 minutes to an hour to release the spasms and contractions.

@houstor60 Hello and good for you to reach out to others for input.
I am so thankful that you have a husband who is fighting along with you against this 'enemy' who has entered your lives. During this time of 'where can I get help', getting the medical and emotional support for both of you is beyond necessary. You will take good care of each other while you both adjust to this diagnosis.
As Becky has said getting the right doctors is a primary requirement. Finding the right place to go is foundational: Usually, it is a university hospital that can offer more up-to-date information, greater testing facilities and on-going research; doctors who are specialists with 'extra specialities' in Stiff Person Syndrome. The challenge of finding this place and experts is a huge challenge but your necessary first step. Your computer and telephone are great tools to use in your 'hunt'. Keep asking questions.
You have mentioned anxiety and depression...! When we are in these times, it is like a tsunami ! The tyranny of the questions like: 'what's happening to me, who can help, what medications are there yet to try, is there any medication trials I can try, who can understand this, how can I stop this pain. Feeling the despair of being overwhelmed, angry, tearful is all part of the process, while we face what most people never have to even think about. These feelings are normal in this situation. But knowing that you have a strong team of experts and the support of loved ones and Others, who are on the same road, is essential to your well-being.
All of this is necessary as you discover and get all your 'tools of defence' together.
I am sending you encouragement as you build the best up to date care, as well as your essential 'team' of support.
Let us know what you have found and how you are going forward.
We are cheering for you!!

@houstor60 I don’t know if you feel up to traveling, but my doctor at University of Colorado in Denver is considered one of the best in autoimmune diseases that impact the brain. She just received a $2M gift to establish a stiff person syndrome clinic and treatment center at UC. I know that traveling now might be very difficult but, if you have a neurologist he could contact her peer to peer.
I encourage you to see how you can get an appointment with her.
I couldn’t get my photos of all her info to print, so I’ll try private messaging.

Sadly this syndrome is rarely caught early. Even many rheumatologist do not think of it early in the diagnostic work up. There are few thought leaders in this syndrome.

@houstor60, you may be interested in these related discussions:
- Stiff Person Syndrome: Want to connect with others: https://connect.mayoclinic.org/discussion/stiff-person-syndrome/
- Possible Stiff Person Sydrome: https://connect.mayoclinic.org/discussion/possible-stiff-person-sydrome/

Here's an article from Mayo Clinic by Dr. McKeon, a neurology specialist at Mayo Clinic in Rochester, Minnesota. His research interests pertain to autoimmune neurological diseases of the central nervous system, including autoimmune encephalitis, autoimmune movement disorders and stiff person syndrome.
- What is stiff person syndrome? Understanding a rare neurological disorder https://mcpress.mayoclinic.org/healthy-brain/what-is-stiff-person-syndrome-understanding-a-rare-neurological-disorder/

Don't we love the heating pad!

I feel sad that you are going through this .
I luckily was diagnosed with MS, and have a gamut of autoimmune symptoms also including the spasms.
I feel lucky for that diagnosis because there are so many treatments, and the same symptoms as these "other" diseases. The lesions on the nerves in the spinal cords and brain are fairly easy to see and diagnose with an MRI comparatively? But I've never diagnosed someone.

Regardless, the dendritic damage is what causes the stiffness, as GABA and other important compounds are made on the dendrite. They just found this out, where they are manufactured. Any dendritic damage caused by any cause should involve replacement of the neurochemicals that the body can no longer make.

I have to do liquids. And since MS diagnosis developed allergic response to fructose (also glucose fructose, but plain glucose and maltose is ok), and surmise it's because part of fructose digestion as well as part of krebs cycle is also made on the dendrite.
So, you know, I eat vegan keto. Where i live theres nothing on the market, but if you look at the ingredients in baby formula, and change the sugars, and add MCT oil, then you would be kind of close to meeting nutrition , but remember electrolytes. Ketosis is potentially fatal, and must be supervised by a professional. Getting acidic is a real issue, i have seen diabetics try the keto diet for healing, and it was working, but ended up in hospital because over did the fasting and needed intravenous electrolytes to bring the alkalinity back.
The brain fog goes away, the inflammation goes away, for me at least. I take a lot of GABA to release the spasms, from health food store, but I wouldn't do that if you are taking opioid etc as it changes everything.
This will take a specialist or two, but hopefully they'll get a diagnosis and treatment.
Just saying what was helpful for me, when they did not have anything else I could do. Regained my typing and speech somewhat, so that's a positive .
Hoping for good outcome, and the good news is in the USA I have seen some products that I can't get here that I might not react to, in the vegan keto fructose free realm. Berries and antioxidants type noni currants etc are fine, but most other fruits set off my entire system quickly due to this autoimmune. No honey either, but can have barley malt for carbs.

If someone wants to send this story to NASA about how to nourish someone with dendritic damage it would help them a lot as well. The astronauts reportedly got MS type symptoms in orbit, which would make sense with the types of pressures they face.

Sincerely,
Tracey