Question in the title really. I've read the LDN threads but they're all very positive which is great.

But has anyone tried it, struggled to get it, started it and then thought no, for whatever reason, it's no good for me, I'm going back onto a DMD. ?

Thanks on advance for any replies

Not me, Baby, but Im sure there are those, for whom LDN does not work. Some have added a DMD to their LDN, preferribly Copaxone.

I did. I started Copaxone in 05/2008. Was on it for a month. Decided to try LDN. My neurologist said okay. I thought I would try LDN by itself instead of along with Copaxone. I was on LDN for 11 months.

I constantly had cramping in my left calf along with cramping in my left toes. I tried adjusting the LDN dosage. I even tried transdermal LDN. I thought magnesium and other supps would help. Nothing did. I finally called it quits in 06/2009.

I have since been on Copaxone. I have also started IVIG in 08/2009. I was hoping LDN would work. I am PRMS.

I stopped using Betaseron about a year and a half ago.......side effects were getting pretty ridiculous and so was the cost. I started LDN and haven't looked back. It works very well for me. And it's about $18 a month versus $1900 for the Beta.

Everyone stay away from my LDN and nobody gets hurt!

I've only heard good things about LDN. But as you say, it's the cost factor, and that's also probably the biggest reason why it's so tough to get it prescribed. Or at least that's what I would guess. ... well and is it not outside the protocol too?

Kitty, you're wise to guard your stash!

LDN is not a DMD so I don't see why you can't take it with your normal MS meds? From what I've heard it's for treating symptoms and it only works for some people. My neuro doesn't recommend it so it isn't even an option for me. (I don't want it either as of yet.)

I have medical ins for any drug I want. I tried Avonex, then Copaxone, then went without any drugs for a few years. I tried again, in February 2008, at my Neuro's request to be on something or Ty, so for two weeks from heck I tried Copaxone again. The side effects were unreal. I gave away the rest.

Had to see many doctors to clear the swelling, hives and pain. I couldn't even let my clothes touch the sites of the two week worth of jabs.

That was the end of DMD's for me. On December 15, 2008 I started LDN and never looked back. It has been great for me. Much more effective than the DMD's for me without the nasty side effects.

I would not ever go back to DMD's again. I won't try Ty or Chemo's. If CCSVI turns out to be our cure, I would try that along with my LDN.

Kitty I just got another refill so I won't touch your stash. Honest Injun.

I will be 70 on my next Birthday and I don't feel any older than when I was a young 63 and started LDN..

I'm not kidding, I would probably be in a nursing home by now, if it weren't for the help of my LDN. Kitty's right....you take my LDN - you die.

LDN is not a mainstream DMD .... BUT it is ALSO not a mainstream symptom management drug for MS.

Naltrexone, at a much higher dosage, has been clinically trialed and on the market for many years ... for drug and alcohol abuse.

However, about 25 yrs ago (before the Disease Modifying Drugs were even on the market), a neurologist in New York got to thinking that it may work on MS .... at a much lower dosage. He started rxing to his patients for the purposes of reducing RELAPSES and disease PROGRESSION.

So ... those are the reasons that we take it ... and although this generic and cheap drug has never undergone clinical trials for MS, anecdotally many thousands of people take it with the goal to affecting the outcome of this disease. The fact that it works for symptoms as well, for many people, is just an added BONUS.

Pud's friend, I know of a handful of people who have gone off LDN. In most cases it is because they haven't seen the symptom improvement that they were hoping for ... so they lost faith that it might be working for the underlying disease process as well.

Cherie

Right on, Cherie.