I can't tell you how glad I am to meet someone with the same illnesses as I have, even though I'm so sorry that you are going through it also.

I believe that I have a very severe kind of SPS because not only do I have the stiffness in my neck, back and legs, but I also have the response to outside noises and problems with other stimuli. Before I started taking the valium, I had fallen backwards at least a dozen times, hit my head on hard surfaces like concrete or tile floors, twice I split my head open and bled quite a bit. I had cracked my right collar bone and the one time I fell forward I broke my right shoulder. Each time it happened because I touched something that I was not aware of and I would become totally stiff, generally blackout and fall. I'm amazed that I didn't get a concusion from them but I had a CT scan after the last one and it was clear (it even showed that I actually have something between my ears which I had started to believe that there was just empty space up there!).

After I started taking the valium, these episodes have stopped (cross my fingers) which is a blessing. I still am so afraid that it will happen again it has really played games with my mind. I have had balance issues from the start and cannot walk without a cane or walker for stabilty. I can't work any more which was hard to take because I can no longer drive and I run out of energy so easily. Beside the fact that the drugs have slowed my mind and the work I did was bookkeeping and administrative assistant.

In reading some of my previous posts I realized that I incorrectly listed the amount of Imuran I am taking as 450 mg per day. It is actually 150 mg per day. Another brain cramp!

I will think about you every day and send good thoughts your way. I truly hope that the thymectomy goes well with no adverse reactions. Mine was performed through my breastbone because the thymoma was so large. I was given morphine afterward (thankfully) and used every bit that I could. The pain was unbelieveable.

Good luck and keep me updated on your progress.

Becky
Southern Bell