Hi everybody,
I was introduced to this website by Christine. Hi Christine.
I cheated a little bit and cut and paste my introduction that I wrote to the NAF (National Ataxia Foundation). My poor old fingers needed a break. Here's my intro:
I am a 55 year old woman that lives in a small town in Oklahoma. I first notice symptoms when I was 45 years old. A small shake in my left hand, especially when I would use the computer. I went to a PA (clinic, I was active duty, USAF) and he thought it might be essential tremor until he did the finger-to-finger test. He became alarmed and ordered an MRI. Everything seemed normal. As time went on I felt off-balanced and my "navigation" did not seem normal. I insisted to my M.D. that it was due to my ears and he sent me to a ENT specialist. My ears checked out fine but when the ENT Dr. asked me to do heel-to-toe test my whole body shook. He instantly referred me to a neurologist. The neurologist said I was OK but I knew I wasn't. I went to another neurologist who said I was ataxic. She ran some test and I found out I was B12 and Vitamin E deficient. YEA!!!! I was so relieved, these conditions were treatable!!!!! I was given B12 injection and vitamin E supplements but I kept getting worse. I saw two more neurologists who said my symptoms might be 80% B12 (
?) or 20% cerebellar disease. I then saw two movement experts, the second one said I have cerebellum disease. He ran numerous tests and he said my cerebellum looked normal (I've had 4 MRIs done). My second visit with him he said my cerebellum had shrunk. What?
? Why didn't he tell me about that in the first place?
?
My history is that my grandmother died of a heart attack with cerebellar complications. I saw her right before she died (I believe I was 14). Her legs and arms were ataxic and her speech was very slurred (like she had been drinking a lot). I remember her laying in the bed while doctors talked over her, like she didn't exist. The thing I remember most is the in her eyes.
Now I am on a walker, I have no balance. My body shakes whenever I move. I cannot speak fluently. This is especially difficult for me. I use to be a Toastmaster (speaking club) and I won many awards. I also use to ride show horses which I had won many awards. My two and I can't do either now. I was outgoing, confident, and positive. I'm not that person anymore. I am withdrawn, depressed, and sad. I am also angry. I am angry at people that can walk. I am angry that I cannot do what I use to do, I am angry at my grandmother (even though she's a much of a victim as me), I am angry at researchers who have not come up with some kind of treatment (even though I know they are working as hard as they can). I guess I"m going through the 5 stages of grief. When will I "accept" this horrible disease???
I have a wonderful support system, a husband that I will be married to for almost 21 years. Two beautiful daughters (did I this defective gene to them?) Please no.
I'm suppose to have genetic testing this winter. I hope at least it will be a known defective gene, then I can have my girls tested.
My question is, what stem cell center to go to? Does it really help? Can treatments help severe tremors? Christine has helped me with a lot of my questions. Anything anybody else can add will be appreciated. I feel that stem cells are the answer, but I need actual patients to tell me how they improved once they got their treatment.
Thanks,
Sara
