It seems that Valium and Balcofen isn't going to be the miracle cure for SPS it appeared at first. It worked real well the first month, then I had the surgery and it never quite seemed as effective afterward. I just figured it was a post-surgical flair and didn't think much of it as I wasn't too uncomfortable and I was getting around.

About two weeks ago I woke up and wasn't able to walk anymore. I upped the Valium from 7.5 to 10mg doses and it helped for all of a day and a half (long enough for my doctor to see me, ironically). She said to to go back down at the end of the week since it seemed the flair broke. Next morning I woke up and couldn't move again. I got my IVIG pushed up, but that hasn't helped. And I've added some klonopin into the mix (which helped for all of three days before I've started adjusting to that).

I'm afraid that by having me on a low dose of klonopin for so many years for the myoclonus (which is probably SPS related), but old neuro killed any chance of getting this syndrome under control. My body seems to know what a benzo is and how to counter it.

I'm really not sure what to do--maybe when I get a BiPAP machine and am sleeping normally, some of these other issues will heal, or the thymectomy may start helping in a few months. I'd back off the muscle relaxants, as all they seem to be doing is sedating me at this point, but if my symptoms are this bad w/ them, I'm afraid what they'd be like if I go back down.

I wish there was a SPS expert I could go to for a consult so I knew what options I have (if any), but the only one that exists is out of the country. My current neuro (who I really trust) has treated about 300 MG patients and 1 SPS patient. Ironically, that makes her a SPS expert compared to most neuros, but I really can't live in as much pain as I'd been in, and thats the direction I see this going.

I guess since the assumption was that 10mg of Valium and IVIG would get everything back under control and that didn't work, I'll have to wait and see what the next step is. Unfortunately my next sleep study is over a week away, and the priority is probably to get sleeping under control then adjust medcine, especially since more benzos probably make the apnea worse. I should see if they can push that up at all