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Old 02-05-2010, 03:47 PM
pwells1997 pwells1997 is offline
New Member
 
Join Date: Feb 2010
Posts: 3
15 yr Member
pwells1997 pwells1997 is offline
New Member
 
Join Date: Feb 2010
Posts: 3
15 yr Member
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I am 54, was diagnosed at 23, and they place my disease onset from history of symptoms at 14 - long before MRIs. My case is fairly typical (as far as any MS case is "typical"). Obvious relapses with textbook symptoms, remissions, weeks in the hospital each year, weeks in rehab. When the ABC shots finally came out, I started on Betaseron in 1995 and the weeks-long hospitalizations ended. No more in-house rehab. Fewer exacerbations. And so, even though I have had MS for 40 years, I've done fairly well. Until the last couple of years. My strength is gone, my left leg is made of wood most of the time. Most of the last 16 months have been spent is bed. But instead of treating more vigorously, or changing the therapy, my MD is suddenly convinced the dx is wrong! And the reason is the MRI - it is mostly clear just one plaque. Everything else fits MS - and the real clincher is that everytime she decides she's right, she retakes the LP and I always have 16 - 18 bands in the fluid, and for a female that's a pretty solid diagnosis.

So she has kind of pulled away from treating me actively. In December I had an acute exacerbation start: my eyes wouldn't track together and the left one couldn't see color, my left side gave out and just dragged, I had huge cognitive deficits (I sewed one button on a sweater and then couldn't remember how to sew on the next!), My PCP said to go to the neurologist, the eye doctor (after examining me) said to get to her quickly, and when I did, expecting IV steroids, she said "We can treat this with medication, or with therapy or just time." Guess which she picked, and which symptoms have gone away.

Des47, I totally see why you're not happy to not have a new diagnosis - it took me ten years of being told I was making it all up before I got mine - that was the standard in the 60's and 70's - and I don't want to be back at sea searching for acceptance again. Also, I don't want to go hunting for a new neurologist. As my PCP so professionally puts it, "Neurologists are lame". It is so hard to find a good one. And mine was great for years. Maybe they get hardened by our wanting them to cure these incurable diseases. I hope you find someone you're happy with. I keep hoping mine will go back to being the one I was happy with.
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Dejibo (02-05-2010), Twinkletoes (02-05-2010)