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Old 07-18-2008, 11:01 AM #1
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Default LDN Information & Check In

This is an interesting blog from a Writer with MS, who discovered LDN. Dr. Gluck of the LDN. org, wrote a comment, as well.

http://sclerotics.wordpress.com/2008/07/16/27-miracle-cure/
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Old 07-18-2008, 11:24 AM #2
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Thanks, Sally. I've been asking my Neuro to prescribe LDN for me but he refuses to do so. I even asked him to just let me try it for a few months - if it didn't help then I would not ask for more. No luck.....

How long have you been on it? Which of your symptoms did you notice improvement in? How long did it take for you to notice those improvements?

How can I get a script for it? Do I have to go through an on-line pharmacy to get it?

Sorry for all the questions.....it's just that this article was really informative and I would at least like to try it.
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Old 07-18-2008, 01:01 PM #3
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Kelly, I PMed you some info.

I know I've said this 100 times, so, log off, if you don't want to hear it again..

I started on LDN in April of 2003 and the very first day, I noticed that I could stand up easier and faster, dizzyness was gone and i could pee. This initial stuff could certainly be from the placibo effect, but the staying power was certainly not.....it was all LDN.

I didn't have a lot of symptom relief, since I was already SPMS, when I started. I tried to go up from 3 mg to 4.5mg, but my legs got stiff and uncomortable, so, went back down to 3mg and stayed there for about two yrs. I am on 4.5 now.

This med, right from the beginning, had me feeling better.... I presume it's the endorphines, but I just had an overall feeling of well-being. The other DMDs, made me feel awful...UGH

As far as I'm concerned, LDN has stopped, or at least slowed the progression of my illness and dissability. The DMDs have some scientific proof, backing some of their claims, and LDN is, so far, Antidotal. I say, the proof is in the pudding and it works for me.

Peeps who start LDN earlier in their disease (RRMS), have reported even better sx relief, Than I ( Talk to Larry LDN or our Cherie here at PT. A friend in Austrailia, just e-mailed me that she started on 3 mg of LDN and loves what it has done and is doing for her.

Good luck to you, Kelly.
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Old 07-18-2008, 01:46 PM #4
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I really really really want to try LDN.

Last time I saw my neuro (who wears hearing aids) I asked him about the LDN. I think that he misunderstood me and thought I was talking about some other drug that I cant think of the name of right now (also starts with an "N")

I'm printing off some information about LDN for my neuro visit next week. I am so hoping that he'll give me a Rx for it...if not tho, I might ask my regular doctor the next time I go to see him.

Hopefully the neuro will write me a Rx. I dont see what it would hurt, and if it doesnt work, then it doesnt work. But I want to at least try it.

I dont know if there's any pharmacies here in Nebraska that can compound it for me tho. (I should have gone to pharmacy school like I was thinking about a few years ago...darn!)
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Old 07-18-2008, 03:07 PM #5
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That is Great, Sally !!!

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Old 07-18-2008, 03:53 PM #6
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I'm totally with ya Sally!! The so-called "approved" injectables did a number on me and I just felt miserable all the time. Guess I've been on LDN about four years, think it was about a year after you started that I finally convinced my neuro to prescribe it since all else failed.

Even though I have the nerve pain, it's always been there, and the neuro said at my last checkup, I seem to be stable. Just wish he would have let me take it before becoming SPMS.

Like Sally, the 4.5 mg. caused extra stiff legs so went back to 3 mg and here I've stayed. At the beginning my legs worked some better but the main improvement was in bladder function. I still have to go before I really have to -- LOL -- but without the LDN it's a total disaster. Yes, the well-being feeling is there too with NO side effects, plus it's sure alot cheaper than anything else!!

Try it......maybe you'll like it!!

Thanks for the info Sally!
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Old 07-22-2008, 07:02 AM #7
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Quote:
Originally Posted by herekitty1960 View Post
Thanks, Sally. I've been asking my Neuro to prescribe LDN for me but he refuses to do so. I even asked him to just let me try it for a few months - if it didn't help then I would not ask for more. No luck.....

How long have you been on it? Which of your symptoms did you notice improvement in? How long did it take for you to notice those improvements?

How can I get a script for it? Do I have to go through an on-line pharmacy to get it?

Sorry for all the questions.....it's just that this article was really informative and I would at least like to try it.
Did he give you a rationale for this? I totally understand the skepticism but from what I have read about LDN I don't really think it would be harmful to try it.
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Old 07-22-2008, 02:51 PM #8
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I suggest for all interested, to go to the LDN homepage and read and copy all pertinent info and take it to your Doc and make him read it.. There is absolutely no good reason for any Neuro or PCP to refuse a script for you to try it. ..

http://www.lowdosenaltrexone.org/

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Old 07-22-2008, 03:11 PM #9
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I just left a detailed mess for nero the neuro, and he called back and said tomorrow he should have more time to talk about it over the phone, my neuro is pretty cool i even have his cell number incase of serious emergency

prior to this I have read a few other threads about LDN and have been curious, so lets see if he is game, would love to drop 5-6 meds, that would be great

Again a big hug for Sally and thankl you
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Old 07-22-2008, 10:19 PM #10
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I asked my neuro for the OK to try LDN and my GP prescribed it for me. I am waiting to get some other drugs out of my system before I start LDN so I have a real baseline to judge from.

However, I cannot STAND articles like this that claim a miracle cure for MS and several other diseases. There may be ulterior motives to not promote or research/study LDN, but many people ARE taking it and MOST ARE NOT CURED!! Many have symptom improvement or feel a slowing of progression. I don't care who prints what... if ANYTHING (?perhaps Revimmune?) could guarantee to stop progression, everyone would be on it. Especially with so few potentially dangerous side effects.

I will wait until after my next MRI in Sept and will be starting LDN then...I think
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