This Is MS Multiple Sclerosis Community: Knowledge & Support

I eavesdrop on a few of the LDN boards because I'm very curious about it and the results people have been having. I'm not on it but I don't rule it out as a possibility in the future.

In the last 6 months or so I've noticed that several people have gone through an exacerbation while on the drug and some have been on it for years. I often read that LDN stops the progression of ms, but if you're having attacks, even years apart, isn't that still progression?

Not really sure what you are referring to in regards to someone haveing an exaserbation. If you are on LDN that does not mean that you will not be revisited by old symptoms. LDN will not reverse permanent damage that has already ocurred but you should not see anything new. I would need to know more facts about this but pretty sure that is what you are hearing about no?

The way I understand it an exacerbation is when you have an uptick of symptoms, new or old, that last 48 hrs or longer. In one particular case the person ended up on IV steroids to calm it down. This person has been on many sites and has been a beacon of hope because of the remarkable success with LDN.

It just got me wondering if LDN really stops the progression or maybe just slows it down (not a bad thing) since this person has been on it for several years with no problems then wham, the ms is back.

Right now I am using Rebif for my 'disease modifying drug', I want to try LDN do I will ask my doctor to change me to Copaxone which will still work even with LDN.

I'm still keeping my fingers crossed that some researcher will study LDN for FDA approval but at least I don't have to wait for that and still get its benefits.

I am heartened to hear about someone who was on LDN and had an exascerbation. Absent that it was sounding 'too good to be true' (which usually means it is) .
Larry