Not doing real well
 

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 :(

I'm so sorry to hear about these struggles. Even when there's a plan, everything moves so maddeningly slowly. I hope you can find a way to hang in there, and I hope that if you can get the sleep problems under control, that that will work unexpected miracles. Please keep us up on new developments.

Abby

I'm sorry that you are having a hard time. :hug:

Sorry things are so bad I hope you get some relief soon

Would you please review the basics of your situation, when it started, how it progressed, etc.? Something about your SPS and treatment is bugging me. :cool:

So far, I did some digging and found these.

This man has SPS. Watch his eyes as he lifts his eyebrows. It looks like he has fatigable ptosis too.

http://www.youtube.com/watch?v=LhLADys6F_k

This study suggests Rituximab as a therapy.

http://www.jmedicalcasereports.com/content/4/1/118/

Have they tried Solu-Medrol or other steroids, like inhaled steroids?

http://www.ncbi.nlm.nih.gov/pubmed/1672174

Have you been thoroughly reviewed for other autoimmune diseases? Some people can have autoimmune polyglandular syndrome with SPS.

http://www.ncbi.nlm.nih.gov/pubmed/9187573

One other thought I had was whether or not they have tested your Strep Titer.

http://labtestsonline.org/understand...s/aso/tab/test

It has been proven to be one cause of Tourette Syndrome. Some people have unusually high amounts of this in their blood without having outright strep. It is thought that, in some people, the strep attacks the tissues. Now I know SPS is not TS but since they honestly don't "get" SPS, it's worth thinking outside the box, especially since you aren't doing well.

With any drug, your body can get "used to" it and withdrawal from it can make symptoms worse. Sort of like steroids and how hard it is to withdraw from. You can get a rebound effect.

I'm sorry things aren't going well. I really hope your docs aren't overlooking something.

Annie

I'm really sorry to hear that you are having so much trouble since it looked like you had found a combination of drugs that were helping. I don't know why the surgery would have made things worse, but I had my thymectomy before I started with the drugs.

I truly hope you can find an answer to this new problem. I know somewhat how desperate you feel when you can't walk. My problem has mostly been that I have problems with stablity and stiffness which makes it hard to get around without a cane or walker.

Please keep us updated on what is happening with you. We all care about your health problems and hope you can overcome this setback.

Becky
Southern Bell