News for the Multiple Sclerosis Community

Low Dose Naltrexone (LDN)

I'm taking LDN and I think it is helping
34% (136 votes)
I'm taking LDN and I don't know if it is helping
9% (37 votes)
I'd like to take, but Dr. won't give Rx
17% (67 votes)
I took LDN but stopped
7% (29 votes)
I won't take LDN
8% (32 votes)
What's LDN?
24% (94 votes)
Total votes: 395
I have spoken with numerous patients and followed them over time. LDN works..no doubt about it. If the US drug companies will not work on turning LDN into a blockbuster drug..the Europeans will do it for them. The genie is out of the bottle..
I've been on LDN a year. It has helped with fatigue & spasticity. Most days are highly functional unlike a year ago. It isn't a "miracle cure." I still have MS symptoms and right now they are increasing with the summer heat ... Even on LDN direct sunlight and temps over 80 degrees will bring on the symptoms of a drunken sailor. LDN side effects- increased insomnia but a deeper sleep cycle (I use melatonin to induce sleep) and burning sensation in stomach (I take with food/soy milk and calcium/vitamin D supplement). As to validity of this information ... Anecdotal data is all you may ever get. The chances of LDN going to a clinical trial are slim. Why??? It isn't profitable for the drug companies!!! My prescription costs less than my insurance co-pay. Unlike steroids and the ABCs, LDN doesn't shut down the immune system. If LDN does go to clinical trial for use in MS (it's already FDA approved in 10xhigher doses to help keep opiate addicts/alcoholics sober), it won't be in the U.S. Look to Europe to take the initiative!!! There's already been a 2-week trial in Germany and a handful of others are proposed.
of polls like this? as someone else said, it is totally unscientific. Is it just to make people who use LDN feel good about it?
art's picture
The purpose is to see what others are thinking. People are more likely to participate in a poll like this than a discussion (it's easier). At least based on past attempts trying to get others to comment on their experiences. The first poll we did was successful in that regard.

I get contacted by the press all the time asking "What do people with MS think about X?" This is a way to record the anecdotal stories I get told and is more representative than my memory.

Do you see a harm? Please share. I'm not sure I see what your question was getting at...

the harm is that the information isn't accurate. As I'm sure you know there are statistical methods that need to be followed if you want to get accurate polling data. My question is what is the point of gathering data that is inherantly inaccurate? To me its just a feel good thing. If the press is looking for innacurate, anecdotal information, then your poll is a good source for them. I wouldn't have thought that was what they are looking for. If it is then, I agree, no harm done.
art's picture
Wow! What press do you read? :-) I've yet to see the press who cares (or checks) for accurate info. Again, I'm not sure you've articulated an actual harm. What damage (physical, monetary, etc.) is done?

If the press will call up and ask me what I think, and they're happy with just my memories - they'll be ecstatic about having an actual record of how many people said what to me. They aren't publishing the results. Just taking a temperature to know which way they might go with a story.

But even still, that's not the only reason to do these. When you want to buy a new television or go to a new restaurant do you conduct a scientific study first? I'm guessing not. But I'll bet you poll your friends informally and integrate the responses with your decision on what to buy. Think of these polls in that vein. I'd like to know what my net-buddies think on various topics. This is a fun way to find out. I promise not to submit any of this to a peer reviewed journal.

Maybe the next poll will be:
I like informal polls
I don't like informal polls
I'm not answering - it's not scientific!

:-) :-) :-)

I like the poll as we are getting the actaul first hand information from the patients perspective. We are waiting for scientific data which is often poorly done and trying to prove a particular agenda- that's why Boston Cure is so valuable -the agenda is not driven by an ego or a drug company's profit. I would like to see a poll on what foods and treatments have been found to be helpful. I personally am seeing a Chinese acupunturist and I am sure of the benefit-although I don't understand why it works and I am certain it also is dependant on the skill of the practioner. This person was recommended by people that I respected, word of mouth.
I started taking LDN on 7/08/03. From the first day I had increased leg strength and balance. Also significant improvement with urinary urgency and frequency. No further improvements but those mentioned have remained constant and no further progression.
I have taken LDN since Dec.17/2003. When I started LDN I was looking for wheelchair info. I was already using a walker. Now I can walk without assistance but need a cane at night.

At first I had trouble getting a prescription but then I called some compound pharmacys and asked them to tell me the names and phone numbers of Drs that had sent them prescriptions for LDN. I got the phone numbers, called the Dr. and made an appointment. I have PPMS and have been taking LDN for 30 days. So far it is not a miracle drug but I am sleeping well and am less fatigued during the day. That is worth $25.00 a month to me!