Thread: out to pasture
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Old 04-15-2012, 03:03 PM
Brennan068 Brennan068 is offline
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Join Date: Oct 2008
Posts: 313
15 yr Member
Brennan068 Brennan068 is offline
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Join Date: Oct 2008
Posts: 313
15 yr Member
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Quote:
Originally Posted by alice md View Post
I believe and hope that within the next few years there will me more knowledge, possibly better management approaches for this illness.
I try hard not to be a downer but I don't believe this is a realistic belief or hope. The disease is too rare to get significant research or research funding. The powers that be have "acceptable levels of management" currently and I sincerely believe that unless a rich celebrity comes down with MG we're not going to see much for new cures / management in our lifetimes. The facts are for most of us, a thymectomy leads to remission. For most of the rest, mestinon manages the disease (lucky for me, this is where I fall). For most of the rest, PLEX and/or IVIG gets us through the rough patches. For most of the rest, steroids weakens the immune system enough that the disease becomes manageable with other methods (PLEX, IVIG, Mestinon...) There are frankly very (to?) few of us who are unable to manage the disease with the standards for the medical establishment to invest in many new approaches.

I do hope I'm wrong and a cure is found, but that's my expectation. Maybe (just maybe) arthritis research will spill over to a cure for MG. I think that's probably the best hope we have for a cure in any of our lifetimes.
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