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Posted by Ed
on October 30, 2000 at 21:27:36:
In Reply to: frustration posted by kat on October 13, 2000 at 13:12:40:
: i just feel the need to vent. i am finding out i am like alot of other people out there who have all the signs
: but have no diagnosis. because we have normal mri's and lp's we are not sick . well i for one am tired
: of this. this non-disease i have has caused 4 separate bouts of ON in 17 mo. because of this i am no
: longer able to focus, therefore i can't read but maybe 15 minutes at a time. i used to read afternoons on
: end. i am also unable to take hot bathes or showers, or even be out in the sun for any length of time
: i also have trouble with balance and there are mornings i can hardly hold the dryer long enough to dry
: my hair. i thank God daily this is not a life threatening thing, and i never get ill with God, but the drs are
: another matter. if this were 25 yrs ago, people like me would be diagnosed. doctors WAKE UP
: there is medication out there to help. we should be entitled to it as well. sorry this was so long.
: THANKS for listening
I went for 10 years without having a definitive diagnosis. I've been to Tufts NE Medical Center and St. Elizabeths in Boston and saw some top Neurologists who put me through all the standard test. Before I was 100% diagnosed, my Neurologist got me on to Avonex. I had not had a MRI for three years. I just got the results, no new leisions. Whatever you do, do not give up. Find a neurologist, male or female, who will get you on one of the ABC's.