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    • #15791
      RDT
      Participant

      Hi there,

      Haven’t been on this site in awhile as currently going through chemo, but wondering if Anyone has experience with or ever used natural Acetylcholine Chloride for their LEMS??

      Since LEMS is a presynaptic disorder characterized by impaired quantal release of acetylcholine at the neuromuscular junction, I was wondering if acetylcholine could help with our LEMS symptoms??

      Acetylcholine is the neurotransmitter used at the neuromuscular junction, so basically it is the chemical that motor neurons of the nervous system release in order to activate muscles.

      Since LEMS impairs the release of acetylcholine at the neuromuscular junction, could a natural/homeopathic version of Acetylcholine Chloride be used to help mitigate our symptoms?

      If anyone has ever used, please let me know. I plan to order it tonight, so would love to hear anyone’s thought…

      I’m already on Mestinon, which helps just with me my POTS symptoms. It helps prevent me from passing fully out and losing consciousness. But for me, Mestinon does nothing for my muscle symptoms.

       

      Thanks all in advance <3

      Rebecca

    • #15797
      Price Wooldridge
      Moderator

      Nice to meet you Rebecca.  I learned about acetylcholine as the messenger in my human physiology class.  I’ve never heard anyone mention this as a treatment option for LEMS.  Interesting idea though.  Mestinon was my first medication for LEMS and did help, but it wasn’t highly impactful.  I’ve since added immunoglobulin and amifampridine phosphate.  I’m assuming what you mention is a homeopathic supplement?

    • #15798
      RDT
      Participant

      Hi Price,

      Nice to meet you as well!

      Yes im also on Mestinon but like you, does little for my muscle symptoms. I was on 3,4 DAP but had major reactions. Developed serious cardiac side effects with rhythm changes & suspected seizure. So couldn’t continue with that.

      I also went on IVIG, but after first round developed aseptic meningitis & Contracted Rocky Mountain Spotted Fever from one of the IVIG donors. So ivig was a terrible experience for me. Took nearly a year to recover from that ivig ordeal.

      Plasmapharesis had some good relief but it was short lasting only a week max sadly so not a long term solution. Plus it’s very invasive & crazy expensive $$$ for a single treatment and you require several over a short course of time.

      I like to use natural medicine in junction with traditional allopathic medicine where possible as it seems to help me.

      Before becoming disabled, I was a nurse and clinical scientist, so I’m very versed in research. So I’ve been looking more and more into how LEMS affects us physiologically and saw how our condition reduces acetylcholine. So I started seeing if there was a natural alternative to supplement our lost acetylcholine.

      And yes, I was able to find a natural homeopathic form of acetylcholine. I made this post to see if anyone has ever tried or considered before.

      So Ive decided to be a guinea pig & just try it out. Fortunately there usually aren’t major reaction or serious side effects to short term homeopathic medicines, so I figured it’s worth a try. Nothing will be as bad as my experience with ivig or DAP. I’ll give it a try and see and report back here.

      At this point my neurologist has said I’ve exhausted all the standard lems treatments options. I’ve tried some other treatments as well not listed here. But I’m severely affected by my LEMS as I have difficulty walking, talking, eating and even breathing. So I’m willing to try anything!

      Thanks so much for responding!!

      Rebecca 🤒

       

    • #15799
      Price Wooldridge
      Moderator

      It sounds like you’ve had a rough road.  I’m assuming you’re LEMS diagnosed, though I don’t see that in your original post.  Your comment about Plasmapharesis confirms what I’ve heard about it being invasive.  I was never interested to try it.
      if you are diagnosed, you might consider giving Firdapse (amifampridine phosphate) a try.  It’s the same active ingredient but a different formulation, as 3,4 Dap.
      I also had a strong reaction to my initial loading doses of immunoglobulin, though not as severe as yours.  It’s probably the most impactful treatment I take.  Given how severe you report your symptoms to be, you might consider a second try with treatments.  Let us know if you notice anything from you acetylcholine experiment.

    • #15802
      RDT
      Participant

      Yes, laboratory & EMG confirmed LEMS diagnosis in 2017. I was told by 3 different neurologist & cardiologist that if I reacted to 3,4 DAP, firdapse would arise same results  as well, given the side effects are broadly similar. So firdapse is out.

      Considering I almost died from the meningitis caused by IVIG and now worried about contracting another even more serious virus/bacteria from the ivig donor blood, I think I’ll pass on trying IVIG again…lol…

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