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!

It sounds like your neurologist has done a great job.

The information in these sites might help you:

http://www.medicinenet.com/stiff-per...me/article.htm

https://rarediseases.org/rare-diseas...rson-syndrome/

All the best.

Cannot say I am happy for you with that possible/probable dx, but it seems you have a Dr who is working with and for you. That is cause for some little celebration - Yeehaw!

May the rest of your tests go smoothly and treatment for ANYTHING and EVERYTHING that is found be effective.

Dave.

Valleydachs

Pleased to read that you're making some progress with diagnosis - that last neuro sounds like one to hang on. Heres hoping the treatment helps manage SPS a little better.

Hopefully your husband will adjust to the new diagnosis and what it means - he may take a while to accept that this is the way things are but you've been through so much together and once he gets his head around it he'll be supporting you as well.

All the best and please let us know how you're doing.

Thank you everyone. I don't get here much but I do appreciate your support.
I am now on 4 5mg of Diazepam a day and will go up to 5 tomorrow to reach my goal of 6....30 mg. I woke up today definitely feeling less stiff. That would be improvement if it continuous. I just wish it helped my brain to think and my balance that makes me so wobbly.

Thanks!!!!!!