Jane Blakemore
Message 1 of 1
Hi!! I have a posting from last July in which I said that I was diagnosed with MS in 1976 with two normal spinal taps and in 1977 with, as I've recently found out, a normal myleogram. The diagnosis was in place until a couple of years ago, when drs. started comparing my MRIs and find a twist in my brain stem and progressive atrophy of the pons. Then came the possible diagnosis of Friedreichs ataxia, which I mentioned to an email friend (who has MD) and she told me that FA is a form of MD and that I shoulld get in touch with the MD Assn. and go to one of their clinics. I saw my neurologist for a referral and he verified the MD and said I have possible Friedreich's ataxia, but definately a form of it. I guess that works for me -- as if I had a choice!!! My life now is much the same as it was a year ago, there's been a definate progression of my condition but I'm doing something to make my life, if not my condition, better. I do an aquatic fitness class three mornings a week at the Y and try to keep an upbeat attitude. I wish I'd gotten a second, third and however many more opinions 24 years ago instead of waiting until about 7 years ago. MS is a tough diagnosis to make and I shouldn't have accepted it. My suggestion is -- get all the info you can -- through testing and every time something new is suggested to you, go on the internet and search it out. Be your own medical detective!! God bless. Jane