FINALLY! I have a Neurologist who knows his stuff and is actually interested in finding answers for me.

We already know through a brain MRI that I'm missing more than half of my brain, including the memory portion. Doc said it happened in a stroke early in my fetal development. The good news is, what I have left of a brain, somehow rewired itself and up until about 3 years ago, I lead mostly a pretty normal life. One thing I've never been able to do is drive due to my bad vision and optic nerve damage.

About 3 years ago, I thought that I may have had a small stroke that caused severe stiffness in my trunk, lower back and legs. According to my MRI, that was not the case and suddenly we had a mystery on our hands. Well, 4 Neurologists later (three of them told me it was all in my head and suggested I seek mental help), I have found my wonderful Dr. West. He is actually an MS specialist, but with my symptoms, that's what I thought I had. Turns out that, instead of MS, I may have Stiff Persons Syndrome (SPS). I took my last defining blood test yesterday that should confirm his diagnosis.

There's not much info that I've seen on this condition but I know I can't get around outside my house without my walker because of my stiffness and balance issues. This condition is an autoimmune disease and is progressive and that scares me. This syndrome could also be the reason for my cognitive issues that I developed at the same time I had to stop working.

On the other hand, if this is my diagnosis, at least I know that it certainly was not all in my head and that I really DO have a diagnosis. I'll let y'all know when I get my final say on the matter. In the meantime, my doc is already treating me with Diazepam 5mg to start, going up to 30mg a day. I asked him if I would be slithering out of my chair with that amount of valium and he answered that the med would be going straight to my stiff areas and would be absorbed there. I am also on 90 mg of Cymbalta. The weird thing about this condition is stress or being startled, being cold or afraid can set it off.....hence the valium. Looking back, I do believe the back flares I've had for years were just that, SPS flares because they always popped up after a stressful event.

If anyone has this condition, I'd like to hear your story. Or if anyone can point me to a support group or a good information page on SPS, I sure would be grateful.

Thanks for listening. I changed my mood to YEEHAW because FINALLY I may have a diagnosis but I could also use some support. I am married and already, it has put a strain on our relationship. I can't remember anything I did 5 minutes ago or what I did yesterday but I can remember things from 30 years ago. I may have to start writing down what hubby says if I need to remember so I don't keep asking him things he's already told me. Grrrrr!