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

Jeff,

I hope you see some improvement with the Baclofen and Valium. As a side note, my initial neorologist also had me taking a high dosage of Dantolene along with a lower dosage of the Baclofen. Dantolene is no longer used I think because it is a very powerful drug and will have more of an adverse effect on your internal organs. In fact the pharmacy had to special order the Dantrolene everytime my prescription was renewed because it is no longer carried in their stock. That told me that it probably wasn't a very good drug to be taking.

I have changed neurologists this year to one who is more specialized in MS and he was amazed that I was taking the Dantolene. He immediately increased the Baclofen from 10mg per day to 20mg and started weening me from the Dantrolene. I have completed that transition and have seen no change in my SPS. I'm so thankful that I found a better neurologist that maybe understands MG better. The other neurologists specialty is ALS so I was just an amazement because neither he or other neurologists he questioned had ever heard of anyone with both illnesses. I suppose it was good conversation over a cup of coffee.

Good luck,
Becky
Southern Bell

I've actually seen a huge improvement with the meds. She started me on 10mg of Baclofen and 5mg of Valium, both four times a day. But the scripts said I could go up to 20mg on the Baclofen and 10 on the Valium. Unfortunately, she was in town for about three days and immediately left for another conference, so I wasn't able to ask how quickly I could titrate. I guess its good that she was able to fit me in while she was back since her secretary called me and asked if I could come in with about a day's notice and it would normally take weeks.

I've played with the dosing on my own and settled on the full 20 of baclofen, and 7.5 of the Valium. Between the two, I've been able to walk almost normally (though I've been sore since I've been using a walker and a wheel chair for about two years and was only walking about 50% of the time before that). I tried taking a bit less since its hard to stay awake with it, but I start stiffening up again. I've found caffeine really helps, though.

People at work keep seeing me walking around now and are asking me about it. It reminds me of the last scene in Dr. Strangelove where Peter Sellers get out of his wheel chair and shouts, "Mein Führer! I can walk!" After the fourth or fifth time I explained about SFS, I thought about just using this as a pat answer, but decided at least half the people at work wouldn't get the reference; so I still go into a detailed explanation as to what suddenly changed over a weekend.

i was diagnosed with MG 26 years ago. Ive been suffering from stiffness, and spasms in my therasic spine area, neck, shouldr and upper arms ever since my Thymectomy in June 2011. Now my knees dont want to bend without severe pain too. My GP is useless, i think he sees me as just trying to get out of work. This is the first ive heard of SPS and have just read enough to feel i have it. Im going to ask my GP for the blood test tomorrow. Im keen to talk more if you're interested .....