2 posts I made on MGH

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LarryLDNMember

Posts: 39From: Staten Island, NY. DX 07/31/02 RRMS, LDN since 4/17/03Registered: Jul 2003

posted 08-27-2003 01:35 AM

WOW! So sorry to hear of your LDN experience. Thank you for sharing. I think it's important that anyone who tries LDN and doesn't have good results talks about it. I would imagine that they would. I have tried to talk about the things I was feeling as time went on. But the last 2 months have been great. I'm also working with a chiropractor who helps. There have been some days where I thought I slept wrong and they have helped me feel better. I try to figure out what could be related to the LDN, compared to just the way I sleep. Most of the problems I have had, I discussed with some others on the other groups, seem to be 'healing' rather than 'new problems'. I'm on my way out again tomorrow and won't be back online until 9/1. Tonight was #133 for me. I do feel 'different' than I used to, I don't say this is perfection, but all things considered, LDN has given me a different life than I had before. Everyone is different, everyone has different Daily factors, different history, and depth of damage. I guess it doesn't work for everyone, or work through other problems it can't help. I am ONLY taking LDN, I don't take any other prescriptions except for Advair when I am going to be outdoors a lot. B1 daily when I'm going camping, and B50 Complex, Coral Calcium, and other vitamins sporadically a time or two a week. Good luck in your travels. Hope things work out for you.

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LarryLDNMember

Posts: 39From: Staten Island, NY. DX 07/31/02 RRMS, LDN since 4/17/03Registered: Jul 2003

posted 08-27-2003 01:52 AM

I thought I noticed something strange, and someone else found the same thing. I had had some symptoms that I remember from 2001, that lasted a while and then went away, then I had some from 2000, lasted a while and went away. Then a week or two later I felt 1998 symptoms, they lasted a bit longer than the previous two, and then went away. I also felt my hernia's bothering me for a few days, and I went to my doc to make sure I didn't make them worse than they are, which I didn't. I got the hernia's in 1999 and realized that the pains I was having was in the time between the 2000 and 1998 symptoms. I think my body was healing the residuals left over from them, in reverse order. When I first started, and through early June I guess, I felt this "punching" like sensation, in many places in my body, but never the same exact spot, and no discernable pattern of occurrence. I figure that they were different spots 'waking up' and saying Hello and that the body was working on trying to fix them. Also in the first 3 months I had pins and needles a lot. Most of the time they were when I was leaning on my hands/arms or standing funny.. I seem to remember from years ago that if I restricted the blood flow, the arm or leg or hand would 'fall asleep', that's what it felt like. I just haven't had them in so long I forgot. But that doesn't happen any more. I did have a few times where I had very weak legs, and I went to my chiro each time and I was fine right afterwards. Each of those times I thought I slept wrong. My left shoulder blade problems have been slow to subside, hmmm... I can't remember now when they were tingling last, but they're not right now. I do have back pain around my T5 area, I don't know if it's more now than it used to be, but since there's so much less to release pain signals, that's all that's left. And I still get head/neck spasms at times, and haven't figured out any pattern with them. But they subside after a while. The problems I still live with are NOTHING compared to what I was living with before the LDN. I have more than just MS up top, I have C5 lesions that aren't demyelination, T5 has an area of sclerosis, and my L5/S1 has spina bifida occulta, which I was born with. I think that's what caused me not to be able to control and curl my toes, but 3 months after being on LDN I discovered that I can, and can still control them manually at will.. My right is still not doing it, but I have more control now than I ever did, and keep working on it. Some day... Maybe I can figure all this out and become an LDN consultant, work with patients to see what other dietary or environmental factors we're dealing with. Do you drink caffeine products? Do you eat a lot or any chocolate? I gave up caffeine in 2001 and don't have much nowadays. And CHOCOLATE/COCOA >causes< exacerbations. That is going to be my BIG LDN test maybe in December I'll try it, or maybe I should wait until after I beg another MRI from my neuros.

But I can trigger a full blown exacerbation easily.. I know how.. I've had plenty of experience, and now that I know they were exacerbations and not just very bizarre allergic reactions, I know how to do it. In 1998 if I didn't stop drinking what I was drinking, I'd have been DX PPMS in 1998 and probably been CPMS by 1999. We believe that now, anyway. Well, this is it, I gotta finish up and get to sleep. See you all in September.

I'm almost done and ready for sleep. Just spent some time addressing a former LDN user who stopped after a short time taking it. I think the message above is pretty much the 'problems' I've had with LDN.... and tomorrow should show me some more of the benefits.