This Is MS Multiple Sclerosis Knowledge & Support Community

I started out at 1 mg about 3 months ago and didn't notice much of a change, except maybe a bit more weakness or spasticity. After a month, I doubled to 2 mg and am still there. Weakness and spasticity seem to be worse.

I initially filled a prescription at 4.5mg, but never took it until I worked my way up. I always thought I would get there, but now wonder if I should even go on given current performance with other dosages...

Question: Is it possible that at 1 and 2 mg the negative side effects peak, and then might drop off with the higher 4.5 mg dose? I'd normally just try it, but right now I can't afford for my symptoms to get worse (but don't want to stay at the 2 mg level either, which I strongly suspect is making things worse).

So I'm at a fork in the road: move up to 4.5 or stop all together.

Thank you for any experiences or thoughts.

astro wrote:So I'm at a fork in the road: move up to 4.5 or stop all together.

I'm heading to the fork too, Astro. If we meet up there, I'll buy you a beer!

I've can't say I've noticed any side effects from LDN and was sort of looking forward to interesting dreams. When
I doubled from 1.5 to 3 for a couple of days the fog returned immediately but I stuck it out for 3 days. When I dropped
back down it took a day and I ended back where I am now. Luckily that's pretty damn good.

So ya, the debate is jumping to 4.5 just for fun. I dunno either. Why mess with success? It's way different for you and I'm
not telling you anything but if the risk is feeling crappy for a couple of days why not try it. I'm leaning that way figuring that
I've had lots of crappy days before LDN so what's a couple more?

It's fun going off label, ain't it. I'm starting to wonder if good results with LDN points towards a bad dx of MS and more
towards something like lyme disease.

Best of luck!

I have been taking LDN for 4 years and have had some amazing benefits. I have had ppms for 17 years and am allergic to everything so I did have lots of side effects- insomnia, hot hands, intensely increased spasticity. But I was fortunate in that I had some positive benefits early on so I knew I just had to persist and it has definitely been worth it. I have seen improvements in 11 symptoms and complete cessation in sinus infections (which always caused exacerbations) I never get sick & am always happy. I have not had any progression since I have been taking LDN. I have met people who have had the same reactions as you and have stopped taking it because they were understandably afraid. I have some doctors advise, for people with MS, it is best to start low (1ml) and increase slowly and that this way you avoid the reactions. I have read that even if you take it once a week you reap the benefits. It has probably taken 3 yrs including a jump to 4.5 before I am finally stable at 3ml every second night transdermally (which is meant to be best if you are very allergic see Dr McCandles) in Emu oil. I was allergic (of course) to the emu oil at first but see a kinesiologist (only if you are in AUS, UK not US) who has fixed all my allergies and all reactions to LDN. Its tempting to want to try 4.5 but from my experience I would rather take it slow, diarise & focus on the benefits. Good luck and do not give up:)

Popsie,
I was curious as to what 11 symptoms you have seen improvement in. Could you share?