I started LDN (low-dose Naltrexne) about 18 months ago for MS. I have relapsing Remitting. I am age 57. As I was aging my symptoms continued to get worse although I never lost my mobility. I was pretty miserable until I started LDN. It is remarkable for many of us who suffer with MS. I had every symptom in the book. Today I am symptom free. Loads of information is available on LDN. It's worth a try for anyone with MS!
Hi Jenn. I take 4.5mg which is the recommended dosage given originally by Dr. Bahari (who discovered the use of LDN for neurological conditions). You might want to try it at 4.5. Best of luck. I only wish at your age I had known about it. Better late than never I say. If your increase your dose, let me know how it goes for you.
I've just been diagnosed with Primary progressive, and been told I'm not bad enough for any studies. This new breakthrough, does it include us? or is it just for RRMS ?
Shirley,
Are you talking about the stem cell research, or the LDN?
The stem cell research studies indicate that it does not work on progressive MS, at least not yet.
According to this page on the NMSS's website, LDN is being tested in people with progressive forms of MS.
Dr. Kantor also addressed LDN here.
Perhaps this is something you should take up with your doctor on your next scheduled visit. It's worth looking into.
It seems to me that viewing this as a major breakthrough may be overly optimistic. After all, many MS patients, with nothing other than lifestyle improvements (improved diet, adequate sleep, etc.), have had all lesions disappear and complete functioning return. Of course, the MS came back later.
Considerably more research is needed to assess the benefits of this treatment. In the meantime, I think all of us need to do things that research suggests are effective: an appropriate MS diet, adequate sleep and rest, exercise, and some basic supplements to avoid malnutrition.
It seems to me that viewing this as a major breakthrough may be overly optimistic. After all, many MS patients, with nothing other than lifestyle improvements (improved diet, adequate sleep, etc.), have had all lesions disappear and complete functioning return. Of course, the MS came back later.
Considerably more research is needed to assess the benefits of this treatment. In the meantime, I think all of us need to do things that research suggests are effective: an appropriate MS diet, adequate sleep and rest, exercise, and some basic supplements to avoid malnutrition.
Good point about lifestyle improvements, but I really don't think we're being overly optimistic. Our optimism is based on the fact that this particular study broke new ground, and that future generations may have many more options than we do.
Hope for the future is one thing, but taking care of ourselves to the best of our ability right now is all we can do.
Thanks.
I have tried to get into this study; it is being done here in the Seattle area about 30 miles from where I live. I fit all the criteria to participate, except I had a lazy neurologist (Dr. Huddles***e, I would urge anyone under his care to leave him ASAP) that did a poor job of documenting my exacerbation history.
They have long known that bone marrow & stem cell treatment-transplant can/would halt MS, if you live through the procedure/treatment. I make this statement based on my interactions with a Oncologist who was treating me for thyroid cancer about 10 years ago 9my thyroid cancer was caught very early and cured successfully. He told me way back then that there were cases of persons whom had MS and cancer that received bone marrow transplants and their MS stopped/went into complete remission
These treatments/studies could and would be so much further along if it wasn't for the greedy insurance companies and self-righteous religious ignoramuses in this country.
This treatment does work, but it is for those who can afford $$$ to travel to another country and have the procedure done, and you must have the guts/courage to risk your life.
I am unsure why I am posting this, I am just frustrated because I know we should and could be so much further along in stopping this illness and many other autoimmune conditions.
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Looking at this recent announcement and Lancet article (rather abstract only for me cause I'm reluctant to spend money), it sounded to be very similar to the Revimmune "Hi-Cy" Protocol established at Johns Hopkins. So I looking to it. Yes!!!! They are related.
The trials so far at Johns Hopkins were looking at MSer who were farther along in their disease. So the next step would be to look at "newer" MSers and researchers in Chicago took that step. I believe, however, that the doctors at Johns Hopkins does recommend the "Hi-Cy" protocol be done on MSers which less disability now.
I was also curious to see what differences there may be in the doses of cyclosphosphamide used, and the best I can tell is that they are in the same range as Johns Hopkins protocol. A difference however is in the use of either alemtuzumab or rabbit antithymocyte globulin in addition to cyclosposphamide post removal of peripheral blood stem cells. (No bone marrow removal necessary, woohoo).
From what all I've read in the past year or more, this type of procedure truly does hold the greatest hope for people with autoimmune diseases. I had actually talked to my Mom about the possibility of going through this if it would "clean" my immune system of the MS and RA.
Nice to see it written up using patients early in the disease process. Thanks for sharing this with all of us. (lol. now I've got to go look for another story. hehe) - just kidding.
I knew I saw a little light the other day. It was just a flicker but a light anyway. I just wish that some of these trials would happen in NC. I would gladly submit. but none ever come this far South. They need to know down here in the Furniture Capital that there are plenty MSers. I only hope for the best. We all stand to benefit!
There is so much potential from these studies that I hardly know how to celebrate! If our very own stem cells can be used to treat MS in the early stages, more research will surely find the answers to more advanced stages.
Go stem cells!
Where did you find that it is related to Revimmune? I could not find any direct connection with the folks at John Hopkins. Thanks