I Need Info

A board to discuss Low Dose Naltrexone (LDN) as a treatment for Multiple Sclerosis

I Need Info

Postby Shedy » Tue Mar 23, 2004 4:34 pm

Hello All

This is my second post and it may seem a bit strange but what I'm looking for is information for our local MS Newsletter. I'm the new editor for it and I also write a column concerning any new research going on in regards to MS. For The May 1 edition I'm planning on writing about LDN. I have 2 motives for choosing this topic.
1. Many of our members are already using it.(mostly short term)
2. Many of us are considering it, including yours truly!

I understand that The MS Society's of Canada and The US are not backing LDN usage, but I feel that our members have a right to choose for themself...right?

Anyway....If you could tell my readers anything about it, what would you tell them? I'd love to see a little more than, "Give it a try.", but I don't have the space to include long testimonials either! LOL So, please try and give me one good sentence of what they should know. I will not be mentioning any names of contributers!!

"Thanks so much" in advance to anyone who is inclined to reply!! :D
Shedy

PS. I'm hoping to use this forum in the future for researching many other topics. I really like what I see!! :wink:
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Happy on LDN :)

Postby Andy » Wed Mar 24, 2004 10:00 am

:D Hi there Shedy, I've been on 3mg LDN for 6 weeks now and feel much better already. :D

I wish I'd discovered this years ago!!!

Since I've been on it I no longer have any pain in my feet, legs etc.
I feel almost normal again!!!! WONDERFUL to feel this way again after all these years. :D Obviously I'm NOT cured as it's NOT a cure, BUT I do feel the benefits and have no side effects.

I intend taking LDN for ever if this is the results.

My GP here in the UK prescribed it for me today at long last :D but before that I was obtaining it from a very good Dr in the US.

I admire you for at least taking the time and trouble to find out more about this drug and also for trying to help other MS'ers.
That's all I'm trying to do too.

Regards
Andy :D
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Oh boy..so much to say...so little time..lol.

Postby JoyceF » Wed Mar 24, 2004 4:57 pm

Hi there Shedy,
I too think this is a great step forward and I am all for anything that gets this drug into the limelight where it belongs. Not sure what I would say that is a quick reply but what comes to mind if it must be quick is that I love that I took control of my health and took the leap of faith that this surely is, based on the situation. I love that this drug has given me my life back. I love the feeling of normalcy...only way I can describe it. I'm sure that I don't have to explain that "shoe is about to drop" feeling that all MS patients have but I no longer have that. Please feel free to e-mail me if you have any other questions about this and please do try it for yourself. You will not be sorry that you took that "leap of faith". Good luck to you. wkendz32@hotmail.com
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LDN survey info from 215 users

Postby SammyJo » Thu Apr 15, 2004 7:03 pm

Shedy,

http://home.earthlink.net/~dflomer/LDN/

I have posted an online survey which has collected 215 responses on LDN usage since 2/26. This is not a scientific study, but a more compact way to statistically lump together anecdotal experience, so we can say things like 65% of users report symptom improvement, and 43% think it has halted progression. This kind of info should help your readers make an informed decision, when we lack rock solid research.

I did this so we'd have something more concrete to show our doctors. I am happy to report that I saw my neuro today, who was blown AWAY by my improvement after 2 months on LDN. I had to get the script from another doc to start, but after my neuro saw me prancing about w/o my cane, and looked at the survey results, he happily wrote me a script, and said he was going to take this data to their MS research team. This is at a big US university med school, which publishes many studies on MS.

Perhaps we will get through if we keep at it.
Samantha
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