Hi all,

I was wondering if there's any chance that any other MGers are dealing with Stiff Person Syndrome. Probably not as its so rare, but as autoimmune diseases go together, I thought I'd ask.

My doctor finally got back in touch with me (she's been in a conference in Jamaca with really bad Internet. She thought she had responded to me, but it never came through). Anyway, she confirmed I do have SPS and is starting me on treatment for it. I was just wondering what other people's experience with this might be.

Jeff

Glad your doctor got back in touch with you and diagnosed you. That is half the battle. As for any info, sorry, I can't help, but hope some comes along and helps you with more info for you.

She was actually pretty surprised that I figured out this diagnosis. She's been looking for autoimmune/arthritic type conditions that would cause tight muscles as a symptom since she's never believed MG was my only condition--I went way down hill when my last neuro took me off all muscle relaxants after finding the MG. She originally put me back on them to a limited extent. Now she's increased the dosages quite a bit.

I came across SPS while doing some research on muscle conditions and asked her about it. She said it fits so she'd run the antibody test, but its pretty rare (I think fewer than one in a million). Only problem now is that the disease is so rare, no one has developed a treatment specifically for it like with Mestinon. The treatment options seem to be high doses of Klonopin or Valium to replace the missing GABA transmitters and if that doesn't work, then increase the dose.

The silver lining here is that a few case studies have shown removing the thymus gland can improve Stiff Person symptoms, so I'm keeping my fingers crossed that that helps. So far they've only done it in cases where there's a thymoma or the person also had MG, so its not like there's huge research pool to draw from, but the results look promising. The MG may end up being a blessing in disguise.

Many times, especially in the case of rare diseases, we have to be our own health advocate. Glad you figured it out for her.
Good luck with whatever treatment plan you decide on.

Hi Jeff,

I too have been diagnosed with both autoimmune illnesses in 2009. You are the first person I have found that have them both.

My issues started with a very large thymoma and the initial symptoms were MG, but it didn't take long before the SPS symptoms started. No one at the hospital had ever seen someone have unexplained spasms and their body become stiff as a board. My neurologist only diagnosed MG. Even though he is suppose to be the "go to" neuro in the city for other neurologists to seek out if they can't diagnose a situation.

It took the head doctor in the physical therapy facility which I was placed in after the surgery to remove the thymoma to diagnose SPS. My blood work doesn't show anything except striated muscle which my husband researched and found is a symptom of SPS.

I not take Bachlofen to control the spasms and Valium to help keep me "calm" and not have a reaction to outside stimuli. You need to read up as much as you can on SPS. My husband has found a some information on the web but it really takes time and digging to find it.

If you have any questions, I'll be happy to try to answer them but I'm still trying to come to terms with it myself.

Stay positive (which is very hard to do).

Southern Bell

Thats just the opposite of what I happened with me. I think my initial symptoms (going back over 10 years) were SPS. The MG, I think, generalized later, as it was only in my eyes initially. I find it hard to tell, sometimes, what's from weakness and what's from stiffness. All of the neurologists I've seen have commented on the muscle tightness, and then done little about it. The neuro that diagnosed my MG took me off all muscle relaxants and started cuting me down on klonopin. When I crashed and couldn't move, he dismissed it as a rheumatoid thing. He actually tried to make a joke out of it saying, "Thats a new walk for you, isn't it?" After that, I took the advice of my pain specialist and went to a doctor at a university center.

Since my MG diagnosis, I've assumed that the trouble walking was from weakness and have been taking extra Mestinon. It wasn't until I started suspecting SPS and tried klonopin during the day that I actaully saw some improvement. I should have suspected something since I could always get up during the night and walk around the kitchen and the bathroom, though. I guess when you're barely awake and need a cookie, you don't consider the fact that you can walk.

If you don't mind me asking, what treatment is your doctor using for the SPS. My doctor is an MG expert, but admitted she hasn't seen much SPS. She's increased my Klonopin dose to 4mg/day (which, according to dose charts is about the same as 80mg of Valium), but I find I don't get the benefit of the drug for a full six hours. After about four hours I start to tighten up, and can't walk between hours five and six.

Honestly, I think I had bad pills and tried to get CVS to fill brand, but they didn't stock enough. They switched generics, though, and assured me that this one is better than what Walgreens had given me (the Internet seems to agree as many people with axiety disorders call the brand I've been on placebo).

If these don't work, though, I'm not sure what to ask for. It seems like Valium and Mestinon are the standard treatments, but I noticed that Xanax comes in an extended release formula. If my problem is that it wears off too quickly, maybe this would keep a steady dose in my system.

I'm a bit overwhelmed with this diagnosis. Now that I'm getting to the bottom of things, I'd really like to get my career (and my life) back on track, but its hard when I can't predict whether I can walk from one hour to the next and have constant pain.

The brand was definately not the problems. Had a pill at noon and could walk from about 1 - 4. Between 4 and 4:30, I could feel everything getting tight...now can barely walk. Which sucks because I need to go home at 5 and if I take as directed (every six hours), I won't make it to my car. Will have to tell the doctor that this isn't going to work this way.

Jeff,

I now take 60mg of Baclofen for the spasms, 30mg of Valium to keep me "calm" so that I don't have the reactions to outside stimuli that SPS causes, 450mg of Imuran (Azathioprine) to help control my immune system which is for both MG and SPS, and Prednisone - alternate 20mg one day/5mg next day. I cannot take Mestinon since the one time they gave it to me thankfully I was still in the hospital and it sent me to critical care ICU for a week on a respirator and close to congestive heart faillure.

I have read another post on this site that said that if you can't tolerate Mestinon it probably means that you don't have MG. Don't know that for sure.

My main focus is the SPS and trying to control the spasms. I still get really stiff especially my neck and back and have to lay down every afternoon to rest for several hours.

Hope this helps you.

Becky
Southern Bell

ln reading my last thread, I failed to say that I also have stiffness in my legs during the day. I feel pretty good in the morning when I get up if I've had a decent nights sleep and them start going downhill as the day goes by. Then after I lay down in the afternoon, I feel somewhat recharged. It doesn't help that most of the medicines that I take have a drowsy factor to them.

I take the Imuran because my body is still producting the foreign antibodies that my immune system is fighting even though I've had the thymoma removed. My neurologist can't explain why especially since I've had five rounds of IVIG and one plasmapharesis treatment.

Becky
Southern Bell

My worst time is actually in the morning. I get up and literally can't move. It makes it hard to get to work on time. My neuro originally said I was weak in the morning, but that never quite felt right and the mestinon didn't seem to help. Now that I've been taking the klonopin, I can feel the muscles loosening up...but then they tighten up a short time later. I'm starting to be able to tell the difference between the MG weakness and the SPS tightness. It seems like it should be obvious, but other than everyone telling me that weakness shouldn't cause pain, I was having trouble telling that what I was feeling wasn't weakness.

My doctor agreed that the klonopin isn't lasting long enough and agreed to try Valium and Baclofen. I'll let you know if I have any better luck with that.

Jeff