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

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.

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