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Old 06-18-2009, 09:45 AM
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Grand Magnate
 
Join Date: Jan 2008
Location: Ellicott City, MD
Posts: 3,834
15 yr Member
kicker kicker is offline
Grand Magnate
kicker's Avatar
 
Join Date: Jan 2008
Location: Ellicott City, MD
Posts: 3,834
15 yr Member
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IMHO you never give up and admit defeat - that's just too much.

I've had long times of doing nothing (PPMS responds to little), Gave up Rebif after 2 years, it was doing nothing, swear it made me feel worse than MS- gave me more MS like symptoms, non - ambulatory so they wouldn't let me in Fingolimod clinical trial, but tried. Trying 4-AP soon (non-FDA approved but my neurologist will prescribe -- must be done by a compounding pharmacy - Will try LDN next if this doesn't help - not a great success with PPMSers. If Neuro won't prescribe, bet nice PCP will. Not going out of country, but if stem cell becomes available will try. If nothing is left, will stop until next thing comes. MRIs are bad for me (hate them, I spazz and negate process), not much help (duh, I know I have lesions, loss of walking shows all the progression I need to know) so won't do anymore. But while I make decisions for me, take breaks, I will never give up. Me and Don Quixote (it was a book and musical!!) jousting with windmills. "To dream the impossible dream" the song goes. Yes.
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PPMS, DXed 2002 Queen of Maryland
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