Jane Blakemore
In 1976, after a series of dizzy spells, I saw a neurologist (referred by an ent) who, after 3 visits and 2 normal spinal taps, diagnosed MS and told me to quit work and go on SSD. I did just that and plunged into my new life full force, becoming involved with the Maine chapter of the MS Society -- have started about 6 support groups over the years. Then, in 1988, with my first of many MRIs, the MS began to be questioned and in the past few years the diagnosis has been removed. I've had loads of tests, seen some big time neurologists and have more tests coming. The result so far has been "a slowly progressive neurodegenerative process that likely began at, or before birth", pontine atrophy, possible Friedreich's ataxia or ??. My balance is pretty bad, I have a "scissoring gait", am lightheaded much of the time and it's frustrating because, with no diagnosis, I have no prognosis. I'm 63, I live alone and it's a bit scary. I do have excellent drs. and good neighbors but the uncertainty of my condition (?) is frustrating. I may start a new support group -- "MS or What?"!