I have tested positive for the GAD antibody, normal is <1.5 I am almost 3000. My diagnosis is Stiff Mans syndrome (hence the user name) I have all the classic symptoms (if you can call a disease this rare having any classic symptoms) Most people who test positive for this antibody have diabetes, I do not, half the people who have stiff persons have diabetes. Im just a lone soldier. :jester:

The docs don't quite know if its Autoimmune or Neuromuscular disease, either way Im Kinda screwed. I really want to know, if there are any tried and true ways to send autoimmune disease into remission. And if its a neuro muscular disease is there anyway to help my muscles, stop pulling against each other, my spine has started curving, and it can dislocate joints and break bones, in the worse cases.

I need to elongate, stretch and strengthen my muscles somehow without "working" them or stressing them in the slightest way as that will cause muscle spasms which in turn cause the pulling and all the other problems I mentioned above,,,,its like a circle leading to nowhere. :dizzy: :dizzy: I need help!

Wow, I'm so sorry to hear you are going through this, I hope they can give you want you need soon to relieve you or your symptoms.

From what I've been reading, SMS is considered to be a Autoimmune Neurologic Disorder (Disease). Some people are put on corticosteroids or Prednisone, Depakote, clonazepam, Also (intravenus) immunoglobulin or plasmarapheresis have been used. The most noted for helping is benzodiazepines (Diazepam). You could try to find hidden allergies via blood tests and in turn staying away things like certain foods, which could help put SMS into remission. Dietary adjustments and Detoxification can help it seems. Emotional stress or stiumli from external sorcess could be another reasons for symptoms.

Some of these drugs I mentioned may be the same drug but another name or some of these may be related or simular or may be marketed under a different name or the name of the clasification of many drugs. Over all, it seems like a kind of muscle relaxer is needed.

SMS is also know as Moersch-Woltmann Syndrome and Stiff Person's Syndrome (SPS)

Good Luck to you and God Bless, keep us posted.
I hope something I've mentioned is helpful.

Are you seeing a Neurologist? There may be some neuro specific or neuro specialized docs out there that you could see for your condition as well. Seeing someone dealing with your immune system along with the neuro might help give a deeper understanding as well as a wider range of ideas for treatment(s) available. Just a thought: a medical college could potentially be doing studies or looking for progressive and new treatments as well, might be worth looking into as well.. perhaps...? There is always the Mayo Clinic too or John Hopkins. I say this partly because your condition is rare.

Thanks for your reply....

I am now taking Baclofen (muscle relaxer) and Clonazepam. I take a very small does of clonaepam, and a very heavy dose of Baclofen. I have had siezures for about 10 years now and have taken a lot of AED including The ones you mentioned.

Now I only take trileptal...maybe I need to switch back to depekote? I have been siezure free for years, thanks to the meds. I used to take depekote fwhich kept me free of seizures for about 4 years, I have been on trileptal for about the last 3 1/2 and they both work....I have had only about 2 GM siezures in the last 5 years.

I don't suffer from the spasms, or some of the worse symptoms of the disease at this point, however I do have very pronounced Lordorsis (inwards curve of the spine) and now, I am having a slight S curve starting. I have a constant ache in my back, without the benzo's I would be in a lot of pain.

I Have been told this is an Autoimmune disease and I have also been told this is a Neuromuscular disease (like parkinsons)...medical community is leaning towards autoimmune, but no way to be 100% sure at this point, due to the rarity.

I do see a Neurologist (2 actually) one in my local area who has never had a patient with this disease, and one from the Cleveland area (University Hospital) who has seen "a few."

I have been told that around 300+ people have been diagnosed with this disease???

I think that diet has more to do with this than we know, because so many people who have this are diabetic? Im going to get on the ball....I was just diagnosed this summer...and it only affects my spine and trunctal muscles for now. This is a Central Nervous System gone awry....is there any help for the CNS?:dizzy: :confused:

I will definitely take your advice and find a good allergist to see if I am allergic to something and detoxify, plus change my diet, I have been thinking that is what is needed here....so thanks again, and if you, or anyone else finds out anything else please post, I check in about once every 3 or 4 days.. I need all the help I can get, because so little is known about this.

TIA

I was just checking to see if anyone has any more informaation for me...I am so in need of other opinions and information....come one come all!

Well I was wondering about your curving in the spine, is it really horrible? Is it something that has been talked about correcting via surgery - or does it have to be worse yet to be considered for it? I'm not saying you should or shouldn't get surgery, I'm just curious as to what has been said.

Hello again

Nothing has been said about correcting the spine...as far as I know this disease progresses in some until they curl up and end up in a wheel chair, bed bound or dead.

I dont for see that happening to me, as mind set is very important (I think) but I am slowly getting worse (progressing) like the doctors said I would. This disease can progress over months, years or even decades??? I think I have had this for the past 5 years even though just diagnosed this summer.

I find it hard to believe that there is no help for this disease...I think its more of an issue, of a non study area, because of its rarity. I have heard that all CNS disorders are horrible, but I have always been a healthy person, an athlete in years past and I want to get past this so bad!

I have spoken to a person who has turned to eastern medicine, and diet for help, (which worked for her) I am open to anything at this point, its hard finding any one who knows anything about this or who have even heard about it before.

Most of what I know has come from research on the web...and my doctor tell me I know more than he does

Well it might not be a bad idea to go get together with a Neurosurgeon and an Orthopedic surgeon to see what might be able to be done to prevent you from ever getting that bad.. or even seeing several so as to get their input. Someone who is willing to take the jump to help you... But I think I've seen info where there has been surgery done for people with your spinal cuvering problems, but not necessiarly because off SMS. I'm not saying to rush into surgery, but it might be good to find someone so that if you ever start progressing to a really bad state or if they see that they could potentially improve your quality of life, you'll know there is solution or a hope. Medical colleges or places like John Hopkins or the Mayo Clinic might have some sort of direction for you as well.

You aren't on any cholesterol lowering medications are you? Are you taking supplemental calcium? I would suggest that you investigate the tests Spectracell in Houston offers.. (intracellular nutrient test). I found they are the most complete in one spot. THey thought my mother had stiff mans syndrome.. tests didn't show it, but here symptoms did. Turns she was being poisoned by cholesterol lowering medications. We had the test done at spectracell also. Mayo was of no help. I had to do all the work on my own. SHe is now permanently damged , but at least she is not dead.

Thank you for your reply....

No I dont take any cholesterol lowering medications or supplemental calcium....like you, I have also found that I have to do all the research and make all the suggestions to my doctor in regards to this diagnosis...

My first inclination was that my slew of medications were causing these symptoms as well, I am and have been on many Anti epileptic drugs for 10 years.

My symptoms and A blood test showed that I have stiff mans (I guess the test is conclusive?) My GAD Antibody count was close to 3000.

I plan on seeing an allergist to make sure I don't have any hidden allergies as suggested here and other places. I live in Ohio, and I am not familiar with where to go or who to see for the test you suggest...can you give me more information about your mom?

How is she doing today? As far as I know Stiff Mans Syndrome isn't a death sentence, (but I don’t know much and my doctors don’t either)r...just an end of life as you know it one. I am determined to figure something out before it progresses too much...

Thanks again for your reply...
HAPPY NEW YEAR :jester: :wave: :bouncing: :)

I feel your frustration. I have survived breast cancer two times and was told that the MRI on my spine looked like it had spread to Stage IV. After a year and a half of MRI's, CAT scans, blood work, you name it at MD Anderson Cancer Center in Houston, TX. They finally said, we can't find any cancer. It sorta looks like it, but it's not definitative. So they said to go to a neurosurgeon. I went to him and he said there was nothing he could do. Go see a pain specialist and get on a morphine patch. I went to the pain specialist and he said he didn't think that I had been properly diagnosed yet. He thought it was muscular because I was having extreme muscle spasms all over my body. He referred me to Dr. Mavis Fujii, who did a full neuro exam and blood work and immediately said that she knew exactly what it was. Stiff Person Syndrome. As a matter of fact, she co-authored a paper in the New England Medical Journal that explains in detail and also about a chemo that she and another doctor worked on. But it cost about $25,000-$30,000 a month. But she's is an expert in this field and is sooooo knowledgeable about it. She didn't paint a very pretty picture of it. She was very honest. I'm on Vicoden, Valium and Lyrica and it has totally eliminated the spasms. I'm tired a lot and I take the meds as needed. Some days are better than others. I'm losing more and more use of my legs as she said I would. I sleep alot. But if I sleep for a couple of days, then I can get up and have a good day. But at least i know what I'm dealing with. This article is very informative.
Here is a link to the article and the work and research that Dr. Fujii has done.
https://content.nejm.org/cgi/content/full/345/26/1870?ck=nck

Is Dr Fuji a neurologist or a cancer specialist as well ? Looks like I could take an appt with her. I am the one with problems but looks like the neuros I see are more brain dead than me.

She is a neurologist who specializes in muscular disorders. She is also a neurologist for the astronauts at NASA. She's good