Guest guest Posted May 20, 2004 Report Share Posted May 20, 2004 Good question... I have been on LDN for 10 months. When we first started exchanging progress reports on this site ,it seems that those with RR get the most benefit. It makes sense because once they remit and return to a "normal state" and take LDN there should be no relapse again. Dr, B had told me that I may regain only what I had lost in the last 3 months and nothing more. For those of us on LDN ONLY , this seemed to happen in the first 4-6 weeks. From that point on, I would remain stable.( I am either SP or PP not sure) ..Dr. B was correct. My observation from friends...improvement seems to take a longer if on Copaxone As far as dosage goes, each person must find what their body reacts to. There are some on 1.5 and some on 6mgs. Many have started on 3 for a month and then moved to 4.5 comfortably and felt the difference. I , personally am the rare case (2 out of 350) patient who Dr. B has upped to 6mgs. I have not gained anything more except that now I sleep thru the night therefore function better in the day. The placebo effect would have worn out by now, 10 months on LDN and no progression boosts my outlook on my future . This has been God sent to us all and I wish your wife only wonderful times from now on. Kiki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Hi - Kind of hcesident to answer your post because I have only been on LDN for about 35 days. But I feel GREAT, and am hoping I am one of the " few " who get fantastic results. So here goes: You did not say how long your wife has been on LDN, but I have to caution you, don't expect too much improvement too soon. This is something that needs time to work. Also, I really think from reading everyone's posts that a lot depends on what the individual circumstances are for each of us. I have very mild MS symptoms, and was just recently dx'ed, only maybe 10 years of mild damage and so my experience is much different than someone who is fighting years and years of serious damage. I think everyone would like to know why some get better results quicker than others. Hopefully sometime in the future, a clinical trial will give us some of those answers. For me, I think it has a lot to do with diet, attitude and probably enviromental issues. The million dollar question I guess. I would like to see everyone get the best results possible. If you discover a common factor, I am sure we would all be mondo interested. From reading all of what everyone posts, the higher dose you can tolerate (up to 4.5) the better. At least those who have direct contact with Dr. B say that. And if you can take that much without problem, I would think one would be silly not to. I myself have recently increased from 3.0 to 4.5 and am noticing additional benefits from the higher dose. And of course, we all want all the benefit we can get. But it does seem to have some relationship to the type (RRMS, SPMS, PPMS) of MS one has as to if that holds true. I think a lot of the PPMS and SPMS people really feel that less is more. But for RRMS, I do think you have better chances of best improvement with the highest dosage you can stand. As far as the placebo effect, well - I may be able to fool myself into thinking I am feeling better, possibly even into being better able to move, balance whatever. But I really doubt I could convince my bladder to stop waking me up at night to " go " several times. I don't think I have that much control But indeed - last night I slept 6.5 hours without getting up once. I have not done that in years!!! So, no I don't think this is a placebo for me. Anyhow, I hope you get a lot of responses to your post, and that you find some of those answers to share with the rest of us - and best wishes to your wife, may she get wonderful benefits from the LDN. Cinders Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.