I read recently that there are 10's of thousands of people on LDN now, but I don't know how true that is. When I first started fighting for it, about 4 yrs ago, there weren't that many doctors that would consider rxing it . . . and now most will if we put up a big enough stink.

I'm glad there are so many people that feel they are staying relatively stable over a LONG period of time, and that it doesn't usually have any side-effects. What more could we hope for at this point in time? . . . well except maybe a cure would be nice. :)

Cherie

So did my Neuro, but he still wouldn't prescribe LDN, so I fired him...LOL. I only see my PCP now.:)

Me too! He wanted to put me on Tysabri cuz he has an infusion clinic.

I did go to another neuro, but she got pregnant and cancelled my Oct. appt.

Not sure if I have a neuro or not, but the LDN Rx is thru my local PCP. (He's the only doc in my little town!)

Glad to hear everyone seems to be doing pretty good.

my next neuro appointment is on the 20th and i plan to saunter in his office and shock the **** outa him. last time i was there i was depending on my cane, my wife, the walls, the counters, the chairs, anything within arms reach to help balance myself. i dont think he had much faith in the ldn materials i took him. i think he was just trying to humor me and get the hair brained ideas out of the way quick.well it hasnt been that long since ive seen him and boy do i have a surprize in store

Be sure to let us know what he says, Flute. I hope he is pleasantly surprised..:)

Hi Flutemaker :Wave-Hello: and welcome to the NT's LDN thread.

I'm happy to hear LDN seems to be working so well for you. :)

I got LDN from my GP, and went on it just a few days before I switched neuro's. I was in pretty bad shape, and had been for two years already. My doc was only giving me month-to-month rx's at that point, and my neuro said I could stay on for 9 months, but then we'd have to re-evaluate my status,

When I returned for my annual, she was shocked at how well I was doing. I had reduced my EDSS by one point, and completely stopped having the back-to-back attacks that I had been getting every 3 months prior. She said "what is that stuff you are on??" My doc started rxing on an annual basis.

My neuro has been monitoring me for about 3 1/2 yrs now, and each time she has said there is no point in doing a MRI as I have remained neurologically stable. I did have a rough time with an infection last year, but I came out of it at the same EDSS anyway . . . and I am close to 18 yrs into this disease now (never used any meds along the way).

Even if all I get out of this is the last 3 1/2 yrs, I'll be happy with my choice. LDN gave me back my life . . . for as long as it lasts.

Cherie

Just dropped by to say howdy, hope all are doing well, no changes no bad changes either, have not felt great but not feeling horrid so I guess its all good


peace

Cherie and/or Sally.....I have a question for you. What is the optimal level of LDN to take? Are you getting the maximum benefits when you just take 3.0 or must you take 4.5 to obtain the maximum protection and benefits from it?

I have moved up to 4.5 and think I am tolerating it pretty well. I have noticed that my right knee is much stiffer and I have a harder time moving in the morning when I am on 4.5. I didn't notice any of this when I was at 3.0. Should I just "tough it out" and it will go away eventually? I want to take the dosage that I'll get the maximum benefit from so if this will pass I can wait it out. Also, I am sleeping much more than usual. Could possibly be this flare I'm in that's causing it....but I can get up at 6 AM, go back to bed at 8 AM and sleep until 11 AM....then be ready to lay back down at 3 PM and take a nap!! Let me just add that I don't sleep well during the night and I'm up and down several times.

I won't know until probably tomorrow what the results of my MRI are....I'm so hoping that there is no new activity and all this carp is just stemming from an old lesion deciding to act up.

Thanks!!

kelly i am pretty sure its based on each individual, 4.5 is suppose to be the max from what i read, and like you I did ok at higher dose but was doing better at the lower dose, listen to your body:hug:

Good, Frank.:) Are you on 3mg, now?