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11-21-2011, 04:03 PM | #11 | |||
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Senior Member
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Sounds like a good plan, Twink. The only thing I would question is the LDN. You haven't progressed so far, but who knows what will happen in the future. My neuro agreed that the LDN must be working in my case since after having it for so long, 35 years, I should most likely be bed-ridden by now. It seems to have slowed the progression. Just a thought FWIW?????
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_____________________________________________ .....Judy SPMS -- FIBROMYALGIA -- Ouch! and Ouch! . |
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"Thanks for this!" says: | Twinkletoes (11-22-2011) |
11-21-2011, 05:03 PM | #12 | |||
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Elder
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I took Amantadine for fatigue way back...it made me (more) anxious, and I broke out in purply splotches. Oh well.
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* * * **My flesh and my heart may fail, but God is the strength of my heart and my portion forever. (Psalm 73:26) |
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"Thanks for this!" says: | Twinkletoes (11-22-2011) |
11-22-2011, 12:25 AM | #13 | |||
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Grand Magnate
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He wasn't too thrilled about my quitting these drugs all at once!
Guess it wasn't a smart thing to do -- I've been having some random neuropathy tinging/electrical sensations. So I'm back on the LDN and AD for now.
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Rochelle . . I've lost my mind ... and I don't miss it! LIFE HAS NO REMOTE -- GET UP AND CHANGE IT YOURSELF! |
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"Thanks for this!" says: | hollym (11-22-2011) |
11-28-2011, 08:23 AM | #14 | |||
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Wisest Elder Ever
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I stopped LDN last Saturday (for surgery) and haven't started it again. Can't really tell a difference. I think it'll be a couple of weeks before I start feeling better again but that's because of the anesthesia.
Should I start it again or not? I'm torn because I don't want a flare up.....but I don't want to take stuff that's not helping me, either. Arghhhh.....what to do!!!
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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"Thanks for this!" says: | Twinkletoes (11-29-2011) |
11-28-2011, 03:31 PM | #15 | |||
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Member
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i advise against cutting your antidepressant. thats a classic mistake people make, they feel better so they cut back on the medicine that is making them feel better. its how people end up in very dire straits, imo...
good luck with the rest!
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Multiple Sclerosis Diagnosed August 2010 |
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"Thanks for this!" says: | Twinkletoes (11-29-2011) |
11-28-2011, 04:48 PM | #16 | |||
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Elder
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The trouble with (most) stupid MS drugs is that you can't really tell. You take tylenol and your tooth stops hurting. You take a prescription and your blood pressure goes down, or your blood sugar changes, or whatever.
You take an MS drug and....who knows? If you don't have new lesions/symptoms, then the drug is working...or not. Maybe you wouldn't have had changes anyway. If you have new or more lesions/symptoms, then it ISN'T working...or maybe it is. Maybe you would have had MORE changes without it. I'm not crusading against the DMD's. I'm just sayin'.
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* * * **My flesh and my heart may fail, but God is the strength of my heart and my portion forever. (Psalm 73:26) |
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"Thanks for this!" says: | Kitty (11-28-2011), Twinkletoes (11-29-2011) |
11-28-2011, 06:05 PM | #17 | |||
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Wisest Elder Ever
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Quote:
I hope I don't regret stopping LDN but I'm cutting way back on everything I purchase.
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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"Thanks for this!" says: | Twinkletoes (11-29-2011) |
11-28-2011, 07:35 PM | #18 | |||
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Grand Magnate
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I don't know that he's right but my neuro will not prescribe LDN (Low Dose Naldrex) for my MS as there are no Clinical trials. But Big Pharma certainly won't run any as LDN is not cost effective (A potential big money maker a jaded person might say). I have not pursued other avenues to get it as I'm not sure of it's effectiveness.
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Kicker PPMS, DXed 2002 Queen of Maryland Wise Elder no matter what my count is. |
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"Thanks for this!" says: | Kitty (11-28-2011), Twinkletoes (11-29-2011) |
11-29-2011, 04:29 AM | #19 | |||
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Grand Magnate
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Quote:
Well, you were right, clarkstar! Feeling better now that I'm back on my usual half dose of AD. But have not taken LDN for a couple of weeks and don't miss it. Best wishes to all -- its hard to know what to do. It would be so much simpler if we had definitive proof that DMD's work!
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Rochelle . . I've lost my mind ... and I don't miss it! LIFE HAS NO REMOTE -- GET UP AND CHANGE IT YOURSELF! |
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11-30-2011, 05:36 AM | #20 | |||
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Magnate
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Quote:
Tysabri works fo me and works exactly as it is supposed to do, with no negative side effects. no new lesions, no enhancing lesions, many formerly visualized lesions are gone gone gone!! Too bad everything we take doesn't give us the observable results, both clinical and subjective, that I get from this stuff!
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away? . I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends! diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally 12/03/09 . Negative for JC virus antibodies! . I'm doing alright and making good grades, The future's so bright, I gotta wear shades! . |
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"Thanks for this!" says: | barb02 (11-30-2011), Blessings2You (11-30-2011), ewizabeth (11-30-2011), Kitty (11-30-2011), Twinkletoes (12-03-2011) |
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