Hi and welcome to NeuroTalk! Glad to hear that you're doing well on LDN. It's exciting to feel better, isn't it?! :)

Hi jnet and welcome to NeuroTalk!

I do hope the LDN works for you. I'm like Sally -- I hope the LDN helps, but at least I can feel "proactive" w/o taking shots. Yippee!


When I first began LDN in August, I felt absolutely GREAT the next morning! I don't anymore :confused: (mornings are slow), but what I DO have is improved stamina. I've been sanding and stripping wallpaper today -- something I never even would have attempted a year ago while on Copaxone.

Good luck and well-wishes to everyone on this forum! :grouphug:

Hello Jnet. Sorry Tysabri didn't work out. I hope LDN is the answer for you. You have come to the right place for answers and support. I have found suggestions made here most helpful. I know you will too.

Twink - perhaps you are overdoing it?! I find that when I feel better, I tend to do more than I should. This was a lesson that I learned the hard way over, and over again. Especially during my first year. Actually...I slip up all the time, I'm not so sure I have learned the lesson at all. :D

Yep
 

I’m like you in that respect, mom2five. It seems that there is something in me that insists on pushing the envelope. I do try to be sensible about my physical activity. But since LDN has made me more capable, I see this as an opportunity to rebuild some muscle mass that I had lost due to years of inactivity. Like the old saying goes, you can’t make an omelet without cracking some eggs, and you can’t build muscle mass without pushing yourself a bit. It would be nice if I could just kick back and enjoy my new found mobility in a laid-back manner, but a really healthy body has a robust muscle mass. It is my hope that, with moderate effort, I can see a reduction in my BP and weight. I’ve always said that I want to be the healthiest MS patient I can be.

When I feel good and have energy I make the most of it. Yes, I know I may or may not pay for it later (with fatigue) but while I'm busy it's just a wonderful feeling! :)

I have my phone consultation set up for next Tuesday! :D I can't wait to get my Rx for LDN! I already feel better off of the Avonex...skipping the shot on Sunday was a great decision. I feel so much better. It could be coincidence, perhaps I am going into remission again. Whatever the reason, I'll take it!

Good for you Marion! I want to be healthy with MS too. ;) I do small amounts of exercise throughout the day. This seems to work best for me. I am a "rebounder" and love it. :trampoline:

I picked up the habit about a month ago when my Mom sent it to me. I think she is just trying to help. It really bothers her that there is not much she can do for the MS. She's kind of a control freak, but I love her anyway. :rolleyes:

So often we get the question from newbies, "will my DMD of choice (usually Copaxone, Tysabri, Rebif, Betaseron, Avonex) make me FEEL better". That is always a hard question to answer directly because quite often it may make them "feel" worse in many ways . . . BUT if it works to control the number of relapses they have, ultimately that "feels" better.

With LDN, it does seem to help a number of people with some of their symptoms ... but just like the approved DMD's, we have to remember that is not the goal of utilizing this treatment. Over the long run, if it reduces (or eliminates) relapses, that will make us feel better :), and if progression of the disease is limited (or minimal), this will keep us feeling better much longer :).

If all we can achieve is those results, it's all good IMHO.

Cherie

Be careful not to push it to much. I have learned from experience To go slow. I have been on Betaseron, Copaxone, Rebif, Tysabri and ow LDN. LDN is my last choice before chemo. I have had ms for 10-1/2 yrs. I'm still walking. I look like a drunk sometimes, but hey, that's ok. I can't walk far and I know my limitations now. I use to push it, and then I did more harm than good, so be careful. Excercise and work is good, just don't over do. I have learned the hard way. I'm not looking for LDN to "cure" me or turn back time, but it would be nice to stop things till a cure came along. :)

Oops ... I originally came here to welcome you, jnet, then forgot to. :(

:Wave-Hello: :welcome_sign: to NT, and LDN too. :)

Interesting approach to adapting to LDN, by alternating the dosage like that. Where did that idea come from? I started on 3.0 mg (way back when), but it might have been easier to alternate like you have done.

I take it Tysabri didn't work for you, if you are thinking you feel a little better without it (perhaps also because of the 3.5mg LDN)? How long were you on T for? Did it keep disease progression stable for some time though . . . cause sometimes that's all we can accomplish with the various DMD's we try?

I hope you finally found your ticket to stabilization. :) Unless you continue to have lots of problems, I'd give LDN 9 months to a year . . . as that is how long it took many of us to have some sense of confidence that it was working for us for relapses and progression (although I had considerable symptom mgmt relief from the get-go). I was on a bad downhill slide at that point, after 14 yrs with MS, and have not deteriorated neurologically since I went on LDN . . . at least according to my neuro. ;)

Cherie