Discussion Topic

Experiencing new symptoms after 3 wks on LDN

Posted on 06/05/09, 01:24 pm
I started on LDN 3mg, 3.5 weeks ago and moved up to 4.5mg, 2 weeks ago and over the last week I started having difficulty walking (my left leg has become very hard to move). I had no problems before I started on LDN—should I go back to 3.0? Is the reason this happened because I have had Spasticity in the—past even thought I have never had a real problem walking like I do now. Plus I have horrible leg stiffness too after starting LDN, I only had a little in my right leg before.

Thank you in advance for any responses.
Showing 10 Replies
  • Reply #1 06/10/09  12:50am
    hard to say really, if my reaction to LDN were this, I would certainly be thinking about stopping as well. My experience on LDN has not been negative other than not sleeping, I started on 4.5, switched to 3.0 after two weeks and on week 3 today, I switched not because my nuero advised it, she wants me on CRAB meds, but after reading, it seemed like either I should stop or try reducing the dosage. the last few days, I have felt better, not walking so much, I hardy walk now, but just feeling more "energized". I hope this holds, I believe everyone reacts differently. good luck.
    JMO
  • Reply #2 06/10/09  7:52am
    4.5 makes my legs very stiff in the morning. it's one of the reasons most msers stay at 3. there are ways to counteract it and some say it gets better if you can wait it out but I went back to 3 and stayed there.
  • Reply #3 06/11/09  9:51am
    Update: I switched back to 3mg and after 3 days I have been able to walk like I could before LDN—even better as my coordination/balance have gotten a ton better too. Every day is better than the last.

    Thank you for your responses, it was scary but I stuck it out and did not go off of LDN and I am really happy.
  • Reply #4 06/12/09  4:15pm
    Problems once again.

    Here is the whole story. I started on LDN 3mg on 5-05-09 and I had no problems and nothing changed so then on 5.16.09 I upped it to 4.5mg. On 5.29.09 I started to have problems with my left leg (drop foot, heavy, and sometimes only able to drag my foot), so then I switched back to 3mg on 5.30.09 and things with my left continued to get worse and all of a sudden on 6.06.09 my left leg was back to 100% great working order. It stayed like that until yesterday afternoon (6.11.09) and now today my left leg is horrible again. I did not have an issue with my left leg before I started LDN except for a little bout 10 years ago. I am still taking 3mg and I am wondering if anyone has a suggestion for my as to where I could go from here?

    P.S. I have had MS for almost 14 years now (my first symptom came on before I turned 20).


    Any help is greatly appreciated. Thank you.

  • Reply #5 06/15/09  11:36am
    Has anyone else experienced anything similar to what I wrote on my last post? My left leg is still bothering me and is not getting better.

    Thank you.
  • Reply #6 06/21/09  3:13pm
    Try B1 100 MG once a day for 2-3 weeks and see if that helps?

    I'm only on 3.0 because my legs don't like 4.5 either
  • Reply #7 06/22/09  10:45am
    Thank you Larry—I have been taking B-1 100mg every day.

    I think this problem has been figured out, once I quit taking the capsules and went back to just the liquid my leg came back after a few days. This was the case both times so the thought is that I may be reacting to the Avicel that the LDN capsules are being compounded with. Dr. Skip is now going to use a different filler for me so we will soon find out if that was the issue. I will keep this discussion alive so it may help others also.
  • Reply #8 06/25/09  2:31pm
    yes, it's possible the filler will do it. hope it works out with a different one
  • Reply #9 07/21/09  11:37pm
    Yellow Ive been on 3mg since I started on LDN never have gone up to the 4.5mg I have a little stiffness at times mostly in the morning, but by the time Ive walked to the kitchen to get my coffee its gone. Try to keep walking and exercising, (stretching) the more you use your legs, the less likely they will get stiff. :-)
  • Reply #10 07/22/09  5:44pm
    Update: Since I have been taking LDN with a different filler other-than Avicel,100% of my left leg function is back and I am feeling great.

    Thank you for all the support.

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