Quote:
Originally Posted by Southern Bell
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
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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.