NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)
-   -   LDN Information & Check-in 2 (https://www.neurotalk.org/multiple-sclerosis/71392-ldn-information-check-2-a.html)

Curious 02-12-2009 09:03 PM

Ithink I need to go back to school and become a hairdresser and a nail technition.

I could make a fortune off you guys. http://dl7.glitter-graphics.net/pub/...ytarkruw36.gif

Lady 02-13-2009 02:15 AM

I just received the NMSS Spring 2009 magazine issue and found it online also. Their magazine is called "Momentum".

They have a section called Healthy Living, and Low Dose Naltrexone
information is listed there on three pages in the issue.

They are calling it a CAM therapy. Complementary and Alternative Medicine. Low Dose Naltrexone by Allen C. Bowling, MD, PhD

Online it is:

http://www.nationalmssociety.org/mul...-09/index.aspx

then click on: CAM: The "411" on low-dose naltrexone view as PDF

Hi Marion welcome home again. I am glad to hear you had a wonderful time. :)

.

SallyC 02-13-2009 12:48 PM

Tee Hee, Lady. That's called protecting you a s sets, by stroking your Patients, the NMSS and Big Pharma.:rolleyes: :D

Lady 02-13-2009 11:34 PM

100 percent correct Sally. :D They are sitting on top of the fence on this one, and staying there, for now! ;)

Since so many Neuro's are prescribing LDN, and some small trials have been completed, the NMSS have to be part of the action. Yet, they are fearful of losing their sponsors.

Many off-label medications have taken this path with the NMSS. Just like Neurontin, Provigil and Lyrica, etc. All were used off label. They have used depression meds for pain for eons.

LDN can be used with some DMD's as combo treatment. I am not too sure about the interferons. I don't have that knowledge.

I am sure they will take that route, since it still covers their buttski's. If things change, they will change too. They can't deny all the website attention LDN is getting now from doctors, here and abroad.

SallyC 02-15-2009 12:12 PM

Well, I just received, in the mail, my umpteenth LDN prescription and was sitting here wondering, how long, before a cure or at least an effective Med, for all, will be discovered.:confused:

Don't get me wrong, I love my LDN, but I still have MS, with all the disability, I had acccumulated, before LDN.:mad:

I would still like to run over to DD's and visit with her and DH ands Grandkids, and have fun, one more time, before I leave. "I have promises to keep, before I sleep.":)

Lady 02-17-2009 02:45 AM

Check in: I had a Neuro visit a few days ago and she was very surprised to see how much I have improved on the LDN 3.0 mg. My exam was excellent. She said she will be taking notes on me and doing the full Neuro exam. She said to continue taking the LDN.

So, today I went to my PCP for my refill script. He gladly gave it to me, with a few 90 day refills. I gave him the NMSS CAM article for my file. He said thanks, he may have to give more of his patients LDN.

So I will be refilling my script too Sally. I know you are tried of all the fuss and the refills, but this is a first refill for me and I get excited. (happy dance)

I remember refilling the Copaxone every month, for 3 1/2 years, it got boring. I, too, wish for a cure, with reversal of all residual damage for everyone. I keep praying. What's a girl to do? :)

FluteMaker 02-17-2009 03:37 PM

Quote:

Originally Posted by SallyC (Post 466180)
Well, I just received, in the mail, my umpteenth LDN prescription and was sitting here wondering, how long, before a cure or at least an effective Med, for all, will be discovered.:confused:

Don't get me wrong, I love my LDN, but I still have MS, with all the disability, I had acccumulated, before LDN.:mad:

I would still like to run over to DD's and visit with her and DH ands Grandkids, and have fun, one more time, before I leave. "I have promises to keep, before I sleep.":)

did you not hear about biogen's new toy? they have one in the works(probly about another ten years before testing though) that they claim can actually reverse MS. theyve been working on it for the past 8 years or so, but they seem real excited about it.
http://www.xconomy.com/boston/2008/0...ple-sclerosis/

im a second generation MSer myself. my mother was diagnosed when i was 18.even before then the nmss was preaching 'A cure is just around the corner'...........i gotta ask, how the hell far away is this stinking corner?

SallyC 02-17-2009 07:37 PM

That doesn't sound like a cure, either, Lady. In reading the blurb, I read things like having to take this drug chronically and also it is to be taken in combination with Avonex or Tysabri..:eek: Don't expect a cure from Biogen.....that would cut into their almighty profit.:mad:

The idea sounds good, though, if an honest scientist gets ahold of it and comes up with something that will permanently allow remylenization (sp). It's a positive thing but not in the hands of Biogen IMHO.

Thanks, so much, for posting this, Flutemaker..:hug:

FluteMaker 02-17-2009 11:29 PM

Quote:

Originally Posted by SallyC (Post 467290)
That doesn't sound like a cure, either, Lady. In reading the blurb, I read things like having to take this drug chronically and also it is to be taken in combination with Avonex or Tysabri..:eek: Don't expect a cure from Biogen.....that would cut into their almighty profit.:mad:

The idea sounds good, though, if an honest scientist gets ahold of it and comes up with something that will permanently allow remylenization (sp). It's a positive thing but not in the hands of Biogen IMHO.

Thanks, so much, for posting this, Lady..:hug:

im not realy counting on biogen either. the mayo clinic is working on something simmilar, just biogen is farther ahead. maybe having mayo hot on their heels will get biogen moving though

Lady 02-18-2009 12:23 AM

Thanks for the Biogen article Flutemaker. :)
I don't trust Biogen for some strange reason. ;) They do a lot BS. First they said they were going to give humans mouse DNA??? Now they changed it to human DNA in the new drug. We will have have whiskers and tails at this rate. :D

Avonex is made in the ovary of a Red Chinese hamster, and now mouse DNA. Yikes! I bet it will end up being an injectable, not an oral drug. Injectables cost more. This drug will take ages to come to market. A Clinical trial is just being applied for. I hope something better pops out of the pipeline for our myelin repair very soon.

The article says we do not re-myelinate on our own. That is not true, we do, in many people it has been shown to occur. I think someone has their apples and oranges mixed up. Thanks for the article. I like to read what's happening on the drug front even if they were going to re-coat our nerves with mouse goo. Yucky!


All times are GMT -5. The time now is 12:43 AM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.