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Old 09-22-2012, 04:21 PM
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KittyLady KittyLady is offline
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Join Date: Apr 2012
Location: Indiana
Posts: 430
10 yr Member
KittyLady KittyLady is offline
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Join Date: Apr 2012
Location: Indiana
Posts: 430
10 yr Member
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Quote:
Originally Posted by SallyC View Post
Hi KL. Yes Lord how those Neuros push TY..

Well, I stopped having regular flares and just like you, no longer fully recovered anymore.

I don't want to tell you what to do, but if you are still having exacerbations often...2 or more per year, then maybe, you should try TY to see if it helps you. You could be one of the lucky ones . If not, say after 4/6 mos, there is no improvement or ur worse, drop it and run like the exercise bunny.

Have you tried other DMDs?
I was on betaseron for 9 months, 10yrs ago. Had horrible reactions to it so I dropped it. Got scared off of dmd's til this past Oct and Dec when I had 2 really bad flares. 4 rounds of steroids later, and neuro said its time for a dmd. So he said the only ones I could try since beta caused me so many problems, was ty, gilenya and copaxone. I went for the least risky, copaxone. This is the last one I'll try for now until further studies or whatever are done on the BG12 and that new one I think is call Auggubie, or something like that. From my understanding the BG12 is just as risky as gilenya, so Im pretty much crossing that off my list of hopefuls. Ive wanted to try LDN, but I have a "contract" with copaxone that I have to be on it for one full year unless I develope an allergy to it. Im 7 months in, so not much longer. Doc is really pushing ty and omg, you should see all those MS patients in the infusion room. ALL but me were there for TY! Im sorry, but the chance of a deadly brain infection is enough for me to say NEVER. I have the worst luck with things. If the package says may cause drowsiness, guaranteed I will be out cold. One neuro put me on .5 valium for my spasms, knocked me cold for no less than 8 hours. Did nothing for the spasms! One med said may cause stomach cramps, well, guess who got 'em. Another said may cause migraines, well, same old story. I actually landed in the hospital because of a med side effect. Ive learned the hard way to take side effects seriously. If I have "graduated" to SP, then maybe I can stop all the shots and just do symptom management.
__________________
Dx RRMS April 1992
Yearly flares from 92 to 11
MS induced seizures 2002
Flare Oct 2011
Flare Dec 2011
Left disabled after 2 previous flares
Betaseron '02, Copaxone '12, Tecfidera '13
(allergic reaction to all)
No longer taking any MS therapy meds
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"Thanks for this!" says:
SallyC (09-22-2012)