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#1 | ||
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Junior Member
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Quote:
![]() I have to say that this is incorrect. RRMS only means that you go down, and get back up, go down and get back up, etc.. It has nothing to do with the condition of the lesions at all. Some lesions DO heal, some partly heal, some never go away, and some turn into "black holes" ![]() Also, from what I understand, the CRABS are more for RRMS and not PPMS or SPMS. Only because they are to help "reduce" the amount of "relapses" (RRMS). Therefore once you are SPMS, you are that way b/c of the lesions you "already have". The CRABS do not help with actual sx's Last edited by jena1225; 05-04-2007 at 02:12 PM. |
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#2 | |||
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In Remembrance
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I hear what you're saying, Jena and yes, that could also be true. I'm hoping that the ABCRs are helping PwMS for the long term.
![]() I just have to remain skeptical, because my common sense forces me to do so. ![]() ![]() Love,
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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#3 | ||
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Junior Member
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Hi Sally
![]() What part of that are you skeptical about though? since all the information out there says the same thing... Just curious ![]() Also, I don't dount for a minute that LDN is helping you feel better. I am just not sure about it keeping you from relapsing ![]() Also, I have always been curious - what do you do when your lifetime supply runs out? Thanks! |
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#4 | |||
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Wise Elder
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I'm in that "we'll never know" boat myself right now. Last Oct. my neuro mentioned the possibility that I'm SP now, but is not ready to say so for the record. I haven't had a major exacerbation since starting C, but I have gone steadily downhill the entire time. I hate the not knowing part and my world would most certainly not fall off its axis if I had to quit the shots.
I have legions of lesions and my MRI looks like Vegas from the plane.
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—Cindy For every day I choose to play, I set aside a day to pay. —AMN "Sometimes plastic wrap just won't cling, no matter how much money you put in the meter." —From the Book of True Wizdom |
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#5 | |||
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In Remembrance
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You all realize that Nappy asked this question in May of 2007???? I don't think she is on any DMD now.
![]() It's still an interesting subject, though.
__________________
~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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"Thanks for this!" says: | SandyC (02-25-2008) |
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#6 | |||
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Wise Elder
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. . A woman is like a tea bag. You never know how strong she is until she's in hot water. Eleanor Roosevelt |
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"Thanks for this!" says: | SallyC (02-25-2008) |
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#7 | |||
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In Remembrance
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Hee hee! Almost a year old thread... Interesting subject though.
Beta-1b - Betaseron. Made from e coli... Beta-1a - Avonex/Rebif. Made from chinese hamster ovaries. COP-I - copaxone. Chemically derived. Do any of these work? I don't know. I don't take one, and at the rate I'm progressing, MS is the least of my worries medically. I've had it for 20 years. I remember vividly when beta-1b got FDA approval in 1993. We were shocked (a group of MS'ers all over the country who were following the trials closely). A 30% chance of a 30% reduction in relapses and lesions... It wasn't a miracle drug. Far from it. I still entered the lottery for beta-1b. Drew such a high number it was an additional 15 month wait from August 1993. I lost interest. My bets were on Dr. Ted Yednock's work with monoclonal antibodies. Nope. Not then. I've heard the first two letters of TYsabri, however, are the initials of its founder... Tom |
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#8 | |||
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In Remembrance
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I'm not skeptical of the science of it, Jena. The Scientists have worked hard to find something to help us and I so appreciate it. I'm skeptical of the proposed outcome for all PwMS. Are the DMDs really keeping you from having exacerbations and if so, is that helping to slow the progression of the Disease?
My guess is that, they are not, and the MS just keeps progressing along. LDN has stopped my the progression of my MS...IMHO. I am the same as I was 4yrs ago, when I started LDN and maybe a little better. I didn't notice anything helpful at all, when I was on Avonex for 8 months and then Copaxone for 10 months....only nasty side effects from A and progression the entire time I was on them. I was RR then and progressed to SP, while shooting myself silly with these drugs. ![]() Quote:
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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#9 | |||
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Elder
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Sally, you only have a lifetime supply for a certain medicine? What does that mean?
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#10 | |||
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In Remembrance
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Naltrexone is NOT Navatrone and is NOT a Chemo drug. LDN (Low dose Naltrexone) is perfectly safe and therefore has no lifetime limit.
__________________
~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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