[ Hello my SCA Family! When I was first bombarded with symptoms of SCA, they presented 1st as a stoke, and speech dysphasia, which lasted 3 months. My oh-so-awesome ER and Neoroligic doctors BOTH dared to tell me To My Face that I was simply PRETENDING and doing all of my symptoms for ATTENTION! Well, I am an Irish redhead, and it was ON! I whispered (angrily, of course) that it was not for attention, and even my son's psychiatrist - who also saw me as part of my son's treatment, argued that my symptoms were medical, NOT psychiatric.
But, the lovely Dr.s here chose to assume otherwise. Even when the tremors began; even when my blood pressure plummeted to 60/40 and spiked to 110/100. Even when I tremored and seized so hard and long, I averaged 15-20 a day.
I saw "specialists" in Cleveland, at WVU and at various hospitals, chasing the wind for 2 LONG YEARS. I went thru their psych tests, their epileptic tests, and every other tests they could think of. I had NEVER EVEN heard of OPCA or SCA.
Finally, on Jan. 18, 2006, Dr. Sheikh {Shake} too funny, huh? diagnosed me within 5 minutes with OPCA. She also told me in no uncertain terms to "Go home and wait to die. Or, apply to the NIH as a research patient". And that is how I was introduced to the world of OPCA/SCA. For a Year SOLID, I grieved, and planned my own funeral. But, then I realized that I had this disease, it did not have me! And then in June of 2009, I went to Johns Hopkins, and I was re-examined, and re-diagnosed. It was there that I was told that I had SCA.
My symptoms include SEVERE headaches, nearly 98% of the time on my left side of my head, in my temple. Sometimes they come on so severely that they literally drop me to my knees in pain, and I am incapcitated. I have bladder incontinence. Without my meds, I have headdrop, head tremors, my arms flail out uncontrolled, as do my legs. Does anyone else actually FEEL it when their legs are about to flail? I can Feel an electrical buildup, almost like the pressure you get like when you have to sneeze, at the base of my skull, and then it transfers to the back of my thigh, and then WHAM, out kicks my leg, and I start jacknifing in seizures that hurt like mad.
What about memory loss? My short-term memory sucks, and alot of my long-term memories are being destoyed. And, if I am faced with a new or confusing situation, I can't handle it - I get upset, scared, and I break down crying, scared, like an Alzheimers patient. Does anyone else have extreme sensitivity to cold and heat?
I feel in my gut that I have more going on inside me than just SCA, but since no one else in my family has this, and no neuro around here is worth their salt, I have nowhere to turn for answers. Thank you Craig! for this site! God is Good! ♥The Will of God will not put you where the Grace of God will not protect you. For if HE brought you to it, He will Lead you through it!♥ I know I am long-winded, but I have over 7 years' worth of pent-up questions and feelings to share with anyone, someone who KNOWS!
God Bless All of You!! ~♥~ Garrittygirl!