Lambert-Eaton News Forums Forums Living With LEMS Medical Marijuana – Yes or No?

  • Alan Stone

    Member
    July 22, 2022 at 2:52 pm

    My neighbor, a certified psychoanalyst, advocates for CBD for pain and sleep issues, but I have not tried it yet.

     

     

    • price-wooldridge

      Member
      July 23, 2022 at 8:05 am

      @alan-stone Alan, interesting that you have talked with a psychoanalyst about this. There is plenty of anecdotal evidence out there regarding CBD. I read and record audio tracks for a much larger patient population, Multiple Sclerosis, and there is much anecdotal evidence within their population of its effectiveness as well. Studies have been done, but not extensively.
      For me, I’m currently using some gummies which contain 400 MG CBD, 200 MG CBN, and 2.5 MG melatonin, a natural hormone. They’ve been the most effective at keeping my nervous system calm and helpful with sleep.
      As with everything, it’s best to discuss all this with your healthcare team before starting. I’ve found my doctors very open to these alternative medicine approaches.

  • brian-herres

    Member
    July 28, 2022 at 2:17 am

    Hi

    Ive been soley using Medical Cannabis here in Germany to treat my LEMS for about a year and a half now!

    I had Seizures from Firdapse and also reacted badly to IVIG.

    My insurance pays for it and im doing pretty good 🙂

    Ive been pretty open about it in our Facebook groups.

    Certain types of cannabis are really good at treating alot of autoimmune diseases.

    If your at wits end and nothing is working its worth a try.

    I use a Sativa sparingly in the daytime and Indica before naps and bed time.

    It was a slow process to heal and it took me about 3 months of daily – nightly use to get up to a relative healthy level and yes i get flares but nothing severe or long lasting.

    take care Sincerely Brian

    • price-wooldridge

      Member
      July 28, 2022 at 8:12 am

      It’s unfortunate that Firdapse is contraindicated for you due to seizures, and that IVIG was an issue for you as well.
      I’ve found a combination of CBD, CBN, and melatonin (a natural hormone), has been very effective, taken at bedtime, at calming my autonomic nervous system and provide more restful sleep.
      I’m not aware of any studies showing medical cannabis has an effect at the neuromuscular junction, directly related to LEMS symptoms.

      • brian-herres

        Member
        August 10, 2022 at 2:00 am

        Yes no studies as of yet and that was a big hurdle for me with my insurance company. It works great for me and has given me a huge boost in my quality of life Physically and emotionally! Plenty of info online about acytlcholine inhibitors and so forth online also good info regarding cannabis and treatment for ALS and MS!

        • price-wooldridge

          Member
          August 10, 2022 at 8:27 am

          I’ve read a number of pieces on cannabis use with MS patients. All very positive.

  • dcarpenter

    Member
    August 5, 2022 at 3:02 pm

    I asked my neurologist and primary care physician about using CBD and neither thought it was a good idea because of the lack of research on the effects.

    • brian-herres

      Member
      August 24, 2022 at 3:19 am

      The right strain with the right dosis works great. Ive tried several different strains as this is kind of a expirmental treatment and have found 2 strains that work!

  • Ashley

    Member
    August 10, 2022 at 9:31 am

    Hey @brianherres

    Wow! So interesting that your insurance pays for MM. I’m not sure if insurances here will cover the cost but I know it can be prescribed.

    I’m so glad it works for you, especially since Firdapse isn’t an option for you.

    Can you tell us more about the process of what you needed to do to get it approved?

     

  • Ashley

    Member
    August 10, 2022 at 9:32 am

    @lemsdiscussion

    I’m sorry to hear that! It really makes a world of difference for me.

    • brian-herres

      Member
      August 24, 2022 at 3:17 am

      In Germany i contacted my insurance company which sent me forms for my Doctor to fill out and i sent them all of my medical records. They made a one off decision to approve it as there are no studies for LEMS but i had been using it for about 3 months at the time and showed significant improvement all documented by my doctors. It was a simple process.

  • Ashley

    Member
    August 10, 2022 at 9:32 am

    @lemsdiscussion

    I’m sorry to hear that! It really makes a world of difference for me.

  • Ashley

    Member
    August 24, 2022 at 10:19 am
    @brianherres
    Do you mind if I ask which strains work best for you?
    Oh wow! I’m glad the process is easy there! I’m not sure what the process is like here but I’ll have to do some research! Thanks for sharing with us!
  • brian-herres

    Member
    January 4, 2024 at 11:52 pm

    LA Confidential, Monte Video Spotlight – Purple Dog. Hoof. Sourdough. To name a few that work for me. Jennifer Jeanne Kim might be able to help better in the States strain wise!

    I coached her and she’s doing really good too!!! She went from being carried around to walking over 18000 steps last week on her vacation to Hawaii!!!!!

    3 yrs. Coming May using just Cannabis and im still doing ok for the most part. Considering where I was im doing great!!! Still battling flares but don’t we all?

    Still working full time and getting ready for a 3 week working trip to Rumania. Service work on 8 machines and moving 2 so busy and partly really hard work. Lots of walking too.

    How it’s used is as important as the strain.

    Take care Brian

Log in to reply.