This Is MS Multiple Sclerosis Knowledge & Support Community

Hello all I am new to this board, but not to RRMS (17 yrs since Sx first started), nor am I new to LDN (almost 4 years on it @ 4.5 mg).

During the past nearly 4 yrs I have been symptom and relapse free, and I've felt GREAT. I did have the sleep issues at the beginning, maybe 1-2 weeks of that, but no problems afterwards. I *did* have quite a bit of symptom resolution, including reduced/no Lhermitte's which I noticed perhaps 1-2 months after starting LDN.

However, my brain MRI data *does* show that "a couple" of new lesions have formed during the time I was on LDN, and I am just getting over a relapse now (first in 4 yrs).

During my time on LDN I was not taking any ABCR (or other) meds, and I have no experience with sativex/mj.

Now, we do have 2 trials underway for LDN, UCSF and Milan Italy. But, I don't think either trial is doing MRI...so although I wouldn't be surprised that the studies will show improved quality of life as a benefit from LDN, we won't know from these trials if it modifies the disease or not.

On the other hand, LDN *has* been shown to have a clinical effect on Crohn's disease, and may I remind you all that Tysabri is proven effective in Crohn's disease. Its a big leap of faith to say "Tysabri helps Crohn's, LDN helps Crohn's, Tysabri helps MS, therefore LDN must also help MS". But, I don't believe LDN is without *any* benefit, but I'm not very confident it really affects the disease course of MS, and I'm CERTAIN that it isn't a "cure".

Until trials prove otherwise, I believe TonyJegs is probably right...

Are you on LDN?

yes

How long?

3 days

How many mg's?

3


When do you take it?

at night

What kind of MS do you have (rrms, spms, ppms)?

ppms

Positive changes since/while taking LDN?

too early to tell

Negative changes since/while taking LDN?

too early to tell

Any relapses while on LDN?


The million dollar question: Will you continue to take it?

Hi All, I've been on LDN 3mg now for 3years 8months and have no intention of stopping, although I have slowly got worse (PPMS) I still manage to drive and have my vacations, In April this year I was in Scotland fo 10 days, In May I was in Cyprus for!0 days and in June Iwas in Rhodes for 7 days, my motto is have wheelchair will travel, now I'm back home to enjoy the summer months with my wife, she's fantastic, I could not want for a better wife.....but thats how it should be.
I do not know how I would be if it wasn't for the LDN.
Here's hoping for a cure to this monster to be found for all of us

See my posts earlier on this topic pages 2 and 3 and so on......

Hello everyone.
Because of this and other message boards, I started LDN last Monday. I am so thrilled because I am walking much betterand do not have burning and tingling. Hope it continues to improve. Have had RRMS since '92 and am on copaxone. Was actually able to walk on my treadmill for 2 minutes today after a lapse of three months! Thanks to all of you who post your experiences -- it was a help to me.

Are you on LDN? Yes
How long? 2 Years and one month
How many mg's?
When do you take it?

What kind of MS do you have (rrms, spms, ppms)? SPMS

Positive changes since/while taking LDN? I have gone from being completely wheelchair- bound and on oxygen 24/7 to walking unassisted and oxygen free.

Negative changes since/while taking LDN? None

Any relapses while on LDN? I just had my first this month- a very minor one that my neuro attributes to my overdoing.

The million dollar question: Will you continue to take it? YES!!!!

Dear Bill,

thats really an impressive improvement, congratulations !

May I ask you some further questions:

- Since how long have you been diagnosed as SP when you started LDN?
- For how long did you have your disabilities when you started with LDN?
- How long did it take for you to see things are going better?
- Did you go to MRI scans so that you can compare how it changed in the past two years?

Thanks
--Frank

Frank,
I have had MRIonce a year since before I began taking LDN. The MRIs taken after beginning LDN show no active lesions. I am including a copy of my LDN experiences for you. It was written in December of 2006. I continue to do well, and I am planning to attend the LDN Conference at Vanderbilt University in October. Thanks for asking. Bill

My MS Experience
My name is William (Bill) Roberts; I am 57 years old, was diagnosed with RRMS in 1998, and upgraded to Secondary Progressive in 2002. My chief symptoms are (were) extreme mixed sleep apnea, COPD, inability to walk, total deafness in my left ear, and inability to concentrate for any period of time. I have been treated with Avonex, Copaxone, and Rebif of the ABCR drugs, chemotherapy (Cytoxan, plasma exchange, as well as many, many sessions of IV steroids (Solumedrol). As of June, 2005, I was on oxygen 24/7, wheelchair bound, having a flair of my MS on an average of once a month, and doctors had told me that my breathing difficulties, caused by the MS, would ultimately result in my demise. I had also ballooned in weight to 289 pounds. Two of the top neurologists in Birmingham consulted and agreed that, while continuing on Rebif, I should begin taking a week of IV steroids every three months, regardless of my condition. I did not feel that the steroids were offering enough positive results any longer, and I did not want to take any more. I asked if they would mind my getting an alternate opinion from another neurologist. They agreed.
My new neurologist reran all of the standard MS tests, including MRIs. After studying the results, she suggested I stay on the Rebif and see what the next two months showed with regard to flares or episodes, then to probably go back on chemotherapy. I asked her, at that time, if she would prescribe a drug LDN (Low Dose Naltrexone), for me. I had read a great deal about it and talked to a number of MS sufferers who had improved with the use of LDN, a medication that is FDA approved as a treatment for Heroin addiction and alcoholism. She said she had never prescribed it but had also read a lot about it. She agreed to prescribe it.
I began, around the first of July, 2005, with 1.5 Mg per day for the first week, then increased to 3.0 Mg from then, on. I also stopped taking the Rebif at that time. While I did not notice any improvement for the first three months, I also had NO flares either. Then, I began to notice that my breathing was improving- I could take time off from the oxygen for extended periods of time; the strength in my legs and arms was improving- I began to be able to take short walks with a walker, then longer walks, then changed to a cane, then actually walked to the bathroom without assistance! My sleep began to improve, as well. Improvement continued and actually increased, so that when I went for my six month check-up with my neurologist, I did not even take my cane, and I blew away my neurologist by acing all the tests. I am now driving again after four years, walking totally without assistance, and have dropped my weight down to 232 pounds. I hope to get back to my normal weight of 195 by year's end. In April, after my wife was diagnosed as a borderline diabetic, I walked in a “Walk For Diabetes.” I walked just over 21/2 miles, with no assistance, beginning with the first group out and finishing with the first group in! I was both pleased and proud to accomplish something else I never thought I would be able to do again. Now, I plan to spend the summer building a fence in our back yard and re-landscaping it.
LDN is NOT a cure for MS. I still have it, and I still have issues with it that I have to deal with everyday, but I attribute my miraculous improvement to LDN, attitude, faith, and my new neurologist's willingness to prescribe LDN for me. It is allowing me to do things I never thought I would be able to do again, and if it were to become an approved treatment for MS it could not only possibly do the same for others that it has done for me, but it could also possibly free up millions of dollars that could be used to find the cause of diseases such as MS. Finding the cause for a disease brings researchers MUCH closer to finding a true cure.
Pharmaceutical companies need to be able to make a profit off of the drugs they develop through their research. The cost of such research is very high, and LDN, a very inexpensive medication, will not produce the profits those companies need in order to warrant their doing the trials to get it approved for MS, as well as ALS, Alzheimer’s, Parkinson’s, AIDS, Crohn’s, many types of cancer, child autism, and even Rheumatoid arthritis. .
Websites- http://www.lowdosenaltrexone.org and http://www.ldners.org

Thank you. Sincerely,
William (Bill) Roberts

Hi, I'm contemplating LDN (RRMS, Dx 2008, NOT on medications, only vitamin D and some B12)

My big question is: Did/does anyone experience sleep problems with LDN? And, if yes, how did you cope/remedy? Do the positive effects of LDN outweigh the negative (iff you've experienced sleep issues or any other side effects)?

Thanks a bunch!