I really thought I was losing my mind (no pun intended) when I would explain to the doctors here West Virginia, where I live, Ohio and Maryland, about these other symptoms that I experience. I was soooo tired of hearing that I was "depressed" and needed to see a psychiatrist for stress-induced symptoms that were causing "Conversion Stress Syndrome" and nothing else. Until I found this website support group, I was truly beginning to doubt my own belief in myself and my own sanity. And I have been afflicted with SCA since 02-24-04 - exactly 2 weeks after my 38th birthday.

Ironically, looking back, I was starting to have the early symptoms of short-term memory loss, confusion, anxiety in new situations, and difficulties with my bladder (although then, as still even moreso now, it has been trying to Start urine flow. Ironically, if my mother or children audibly tell me to pee, I can go instantly, but if I am trying to get the signal from my brain to my bladder - nope, not happening.)

I would have to have all instructions written down, even if it were only 2-3, and then refer to them. (I was working in the health insurance industry at the time.). My handwriting became sloppier, and as a portrait artist, that has been one of the most disturbing parts to all of this - that and losing the control over my voice enough to sing my beloved Southern Gospel - for I sang in church.

I have had to use a cane since that week 2-24-04, and it has been quite rough, since I was used to 6 mile walks daily, ever since my heart attacks at age 31.

I can still remember old routine routes, but no one had better give me new directions, or have me try new stores or concepts, I am lost. I will get that deer-in-the-headlights look, panic, and begin to cry. I can't handle the sensory overload - I cannot process, and I cry, because I know I should be able to do this stuff, but it's gone.

I thank God every day that when I first started having the memory problems, my family doctor put me on Neurotin, and when the stroke occurred, I was placed on Requip, Atenolol, Xanax, and Topomax. It wasn't until 2 years later that I was placed on the best medicine for me - Sinemet.

I assume because I didn't "walk" just like the doctors thought I should, and didn't have the correct amount of deterioration in my brain, I couldn't have SCA, but I and my regular doctor persisted, and it took 2 years, but we finally got placed onto the right path, towards SCA - I was originally told OPCA. It took 5 years for the SCA to be dx'd.

My insurance will not pay for genetic testing, but I am the only one in my extended family to present thus far. I pray I am a genetic fluke.

I have trouble breathing, and I choke often, and I have tremors in my hands, and legs, and without my meds, I tingle from my wrists and ankles down. I also have what I refer to as "barometer" or "hatchet" headaches, that come on when the weather changes (the 1st one) and that take me fully by surprise and drop me to the floor in their severity, (the 2nd one). And I am extremely sensitive to the cold and heat. I cannot regulate my body temperature.

I know I am long-winded, but I have 7 years of no one to talk to who knows what I even remotely go through or feel like - and it feels so good to be able to share with someone who can empathize. Thank you for listening/reading/caring. God Bless.