Friday, March 05, 2010


I'm pretty excited. I'm going to be starting Low Dose Naltrexone next week. Just waiting for it to arrive from the pharmacy. I've heard such great things about it, as has my Primary Care Physician. I have changed Neurologists and start with my New Neurologist next week. My PCP has already spoken to my new Neuro about the L.D.N. and he's on board with it. Means no more injections!

The only side effect I've read about is insomnia. Well, since I already have insomnia I'm not to worried about it.  Anyone on LDN have any suggestions or comments about it?


Webster said...

I'll be anxious to hear how you do on LDN. I know my neurologist won't prescribe it for me, because he's conservative, and probably beholden somehow to big pharma. He said he needed to see a published major study on it. But I hadn't thought of trying my PCP for it.

Kimberly said...

I'll keep you posted. My PCP actually brought it up to me after she had been doing some research on it. Then she went to a conference and learned more about it. That's actually where she met my new Neurologist (at the conference). I can't wait to get on it. Everything I've read has been very promising. Of course, it's considered "experimental" with MS, but it's only 35.00 a month TOTAL cost.

sherri said...

I have been on LDN for 10 months. Prior to starting LDN, I've tried the mainstream drugs such as Avonex, Copaxone and Tysabri. I asked my neurologist for it, and she prescribed it. I'm so glad your PCP prescribed it for you.

As far as side effects, I experienced headaches and insomnia the first couple of weeks. I started at 3mg, though. I've heard that if one starts at 1.5mg and works up slowly to the optimal dose, the side effects will not be as severe. I'm not at the optimal dose (4.5mg).

Webster, if you are wanting to try LDN, there are several prescribing doctors out there who do phone consultations for a fee. I know of a person who keeps a database of providers around the world. Let me know if you would like her contact information.

I hope this helps!

~Erin~ said...

I am looking forward to hearing how it goes. Any idea on how long it takes to start noticing any difference?

I doubt my neuro would go along with it either, like Webster said, too conservative. But, I may end up changing neuro's/

Good luck Kimberly! I hope this works!

sherri said...


For me I noticed an increase in energy almost immediately. Over the course of 10 months my bladder function has improved to almost normal and I have more endurance. I'm now able to walk longer distances with my cane. Prior to starting LDN, I couldn't walk far without having to stop and rest. Probably one of the biggest improvements happened about three months after starting it; I regained feeling throughout my body. I had been numb for about two years.

Each person responds differently. I've heard people having immediate responses and I've heard of some who didn't see anything for a year. I would definitely recommend trying it!

Webster said...

Sherri, I would appreciate any and all information you can provide, please. I see my neuro on the 17th and will ask him again re: LDN, but hold no hopes. (But I wonder if he will suggest Ampyra? After all, it's from Big Pharma. If he does, I'll ask for an Rx for 4-AP which would cost little more than a co-pay for the... well, you get the picture.)

You can reach me at

Thank you. (Sorry Kim for hijacking your comment section, but I don't know how to reach Sherry any other way.)