Check in for those on LDN?
 

Hi AGR. I'm on LDN 3.5 yrs now and still doing well. I did increase from 3 to 4.5 for the last 1.5 yrs. No MS progression, and no exacerbations, improvements have stayed, as in better balance, better mood, less spasticity and better strength. I still have most of the MS symptoms that stayed with me. Too bad LDN doesn't go back and wipe it all away.:mad:

The heat, is still a killer, but I manage to stay in the A/C, as much as possible. I have had some heat mini-flares, but getting plenty of rest and getting cool usually puts me back to normal.

I hope everyone else is doing as well. Try not to expect too much from your LDN. It doesn't work BIG miracles, just little ones, but, to me and for me, LDN is "Da Man". :D

Two years and counting on 3.0 mg. However, the next time I speak with my neuro I'm going to ask about upping the dosage somewhat since it doesn't seem to be working as well as before.

At least I feel as though I'm doing something proactive for my ms being I can't tolerate the CRABS -- and I have to admit, swallowing one pill a day sure beats that sharp old needle!

Take care all.....Judy -- aka msproperlady

Bumpidy Bump. :D

LOLLLLLLLLL I thought they had paved the road around here...LOL

Just curious. Has anyone gotten around to doing double blind testing on LDN. I have a friend who uses it and swears by it. I asked but she was not aware of any definitive testing that says> yes, we can now say for sure LDN does...blah, blah, blah....

Also- love the eagles soar....jet engines line. m

There have been some little trials, M, but nothing by big pharma, that makes the front page. I think, in time, it will be proven, that LDN is a symptom management and a neuron protective drug.

It's not a cure, but it sure is making a lot of people feel better. That's a lot better than the reports from people on the ABCRs.

Ya makes your choice and takes you chances.;)

Sixteen months now, and I haven't had a relapse (yet) . . . I was fairly consistently having one every three months prior to starting on LDN.

I am one of the lucky one's that has seen considerable symptom improvement, but am mostly happy because I realized a reduction in my EDSS score, and have had no progression since starting on LDN.

I've had RRMS for 15+ yrs.

Cherie

Lucky you Cherie, pleased to hear it :)

Thanks AGR . . . nice to see you again!

Cherie

Found an interesting recent article on LDN in MS and autism. It doesn't go into any details about MS but it does mention it as helpful:

http://www.dailyevergreen.com/disp_s...?storyId=19110

"Naltrexone has shown to be most effective in controlling autism symptoms when taken in small doses. It also helps in other areas, such as stabilizing multiple sclerosis and controlling cancer growth. "

and you Lady- hope you're keeping well and had a good summer - despite all the horrid heat! lol

LDN'er for 5 months now ( about 1 week now with Dr's rx...)

I have more energy, strength, better balance, not as much jerking, bladder issues improved, sleeping at night, use of my right arm again!!, less bone pain, less buzzing. A nice bonus is the dreams!!! :D

you sound like a born again ms'er Liisa! lol Long may it last!!!

hELP
 

I asked my doctor for a script for this and his reply was no, they haven't done a trial and a small trial doesn't cost much. I have secondary progressive and wondered if anyone knew why a trial has never been done??

Hi Christine.:) First of all, your Doc is old fashioned and a wimp.;) Naltrexone, at low doses (LDN - 3 to 4.5mg) can do no harm, and with the many PWMS on the drug, and loving it, should be enough proof for your Doc to prescribe it for you.

Naltrexone has been FDA approved, at much higher doses (50 to 300mg for the control of drug addiction and alcoholism. It has not been in a lrge Dbl Blind Study for MS, because there is no money in it for Big Pharma, since naltrexone is already an approved drug and is now generic and cheap.

I did mention that there have been some small successful trials done, by interested Docs in the UK. I am only interested in bigger trial being done, because of doubting Docs like yours. As far as I'm concerned, we LDNers have done our own successful trial, and are here to tell about it.

Not scientific, but there you have it. Tell your Doc, that it does no harm and just may help you. That, along with the anticdotal evidence from us, should be all he/she needs to write a script. Unless he/she is one of those close minded Docs, who never thinks outside the box.

Good luck Christine and go to the LDN homepage and ask your Doc to do the same.

10 months now on 4.5 LDN. Everything is less severe. Of course what my symptoms are from is still up in the air. What an improvement of the IBS though! It's like I don't have it anymore.
Pat

A trial to prove that LDN is effective for slowing disease progression and/or reducing attacks would be EXTREMELY expensive, and take many years.

There is a lot of anecdotal evidence out there now about LDN, and more and more people are becoming convinced it's the best option we have. If our ongoing health is the primary concern, I wonder why not do a trial just to prove it's NOT working?

I suspect it's the bottom line that generally dictates where trial monies will be spent, i.e. how much money can be made off a drug?

The good news is that perhaps the NMSS is starting to help in this regard. They have apparently recently granted Dr. Zagon, a researcher who works with Dr. Jill Smith (who is a Crohn's/LDN trial researcher) a pilot grant to start working on LDN with MS.

I believe the thinking is still to test LDN on a single MS symptom (i.e. bladder), and if it proves effective for that, then any other improvements would just be a huge bonus.

Quite honestly, I don't hear of many doctors/neuros these days who are still refusing to rx, so long as the patient is informed and determined.

Like all drugs, I'm sure it works for some, and not so well for others, but it appears to be a safe and effective drug for many with MS.

Cherie

Christine, if you want to try LDN you can do so through sources other than your PCP. PM me and I'll give you the contact details to a doctor who WILL be glad to help on this front.

Yes, my PCP will prescribe it now, but for the past 3.5 yrs, I've been getting my script from A Doc in Pennsylvania, who was recommended by the LDN site. Sometimes, when your, by the book, Neuros won't do it, your PCP will.

My Daughter, who has MS, gets her script from her PCP. She has refused from the beginning to do any of the shots...stubborn, takes after her Mom.:D :cool:

Sally, some of these doctors are for the birds, and I reckon not even the birds will have them! lol I find much of the attitude amongst the med profession is 'if I don't know (of) it' it can't be right...' I have so little respect for the majority of these quacks that for the most part I can't be bothered with them. I'm glad you got sorted anyway, however you did it. :o

Hi All,

I've been on LDN for 10 months now and it basically gave me my life back! The only reason that I go on boards is to help spread the word about LDN and to help others who want to get on LDN! Otherwise I'm healthy enough and well enough to just live a normal life!

Now I realize that not everyone sees the amazing results of this medicine that I did, but there are those who do and I want them to know about this drug.

When I began I was in the middle of an exacerbation and my RRMS was progressing...........I was going down hill quickly and was powerless to do anything about it. Then I stumbled onto LDN! Wow what a discovery it was! I now do anything and everything that I want to do!

The only time that I am aware that I have MS is when I get sick with a cold the flu or an infection and then it wears me down to a point that MS begins to rear it's ugly little head. As soon as I get better from the illness the MS again disappears.

So I'm a LDN lifer!

Welcome, Monica. Glad you found us.:)

If I didn't know better, I'd say you were selling snake oil.:eek: We have a responsibility to all PWMS to not overdo it on the sales pitches.

LDN does help many people, but you are one of the lucky ones, who started it at just the right time for your MS, and it seems to have stablized you. I too have stablized, but in the SPMS mode rather than an earlier stage.

LDN does not go back and wipe out nerve damage that has already occurred. LDN IS NOT A CURE.

I am so happy that your MS is in remission and that LDN is helping you stay there. I hope it lasts forever for you. But, remember, MS, all by itself, can go into remission.

I wish all PWMS would try LDN. Nothing to lose and perhaps a lot to gain. It's a good thing in my book, but like all drugs, it's not for everyone.

Good luck, Monica....You go girl!

You make some very good points, Sally. However, I do believe that for SOME of us, LDN can make THAT much difference in our lives. When it does, it's hard not to scream it at the top of our lungs.

One thing about LDN is that it only stays in your system for about 18 hrs (if I recall the # correctly). It's effects seem to last a little longer for me, but if I am not on it for more than a day, I feel it BIG TIME!!! I've had plenty of opportunities to test that theory, even blindly.

I have had this disease a long time now, and I my pattern of attacks and disability had become consistent, or worsening over the last several years. LDN has changed all of that for me, including reducing my EDSS.

I know it doesn't work for everyone, and some people have less change/improvements. But, I truly believe it is having a significant impact on progression, relapses, and symptoms, FOR ME.

JMHO

Cherie

Sally,

I'm not selling snake oil and for me the results of the LDN were so immediate that I have no question in my mind about what this drug is doing for me and many others.

I have on occassion forgotten to take the drug and boy did I pay for it the next day!

I also said that not everyone gets the same benefits from this drug that I got.......but that for those it does work for the result is usually quite obvious.

The earlier a person begins LDN in the course of the disease the better the result they will get.

Thanks for the well wishes!

I understand your excitement, Monica and Cherie..http://home.earthlink.net/~sal.pal/s...es/snoopy1.gif.. I'm doing the happy dance too!!

I've just heard so many stories from people, who are disappointed, when their LDN does not do for them what it does for you lucky ones.

I want everyone to try it too, but not to expect too much..KWIM?

Carry On LDNers.:D