What else besides Mestinon (pyridostigmine)?

Discussion in 'Fibromyalgia Main Forum' started by Wireless, May 26, 2010.

  1. Wireless

    Wireless New Member

    Mestinon helps me, but it has plenty of side effects. Most other things do not help my Fibro/CFS or I cannot tolerate them.

    Is there anyone who had Mestinon help and found other supplements or meds that have a similar effect, or that they would recommend that I try?

    Or if you know the science behind it and have any ideas for me.
  2. elliespad

    elliespad Member

    Interesting that Mestinon helps you. When my mother was still living, she had MANY health problems. Her weakness and fatigue was diagnosed by a Neurologist as being CLOSEST to Myasthenia Gravis, although he knew this was not an exact diagnosis. She was initially diagnosed using Tensilon Testing. She was treated for years with Mestinon. I am sure she had Fibro and CFIDS but was never diagnosed.

    She had a LOT of other health problems and complicaitons, way worse than these, and suffered horribly.

    I once asked a Dr. I was seeing if he would try me on Mestinon as it helped my mother some. I could never see an increase in her functioning but she felt it helped. He refused to allow me a trial of it.

    There are some Nutritional supplements which will raise Acetylcholine levels, and MAY do what Mestinon does, I don't know. Choline, DMAE and Phosphatidylcholine will increase Acetylcholine levels, but I have never tried this with that intent. I have taken Choline and Phosphatidylcholine, but never took DMAE.
  3. Wireless

    Wireless New Member

    Forgot to check for replies til now.

    Yeah, most doctors know that Mestinon = for someone diagnosed with Myasthenia Gravis. Otherwise they are clueless.

    I managed to get it prescribed to me but I also had a neuro tell me no, I clearly don't have MG and that he thought I was just abusing the drug (to feel better than I needed to / should feel). He's an idiot in my book, obviously. (And he did other things to make me feel this way.)

    A doctor might be more willing to try a Tensilon test (versus just prescribing the drug). I would like to get a Tensilon test done, but on the other hand I don't want to expend a lot of energy and money.

    What's interesting is that a small number of MG experts have come to realize that a LOT of MG cases are slipping through undiagnosed. Because not all MG patients have the obvious drooping, etc. I feel like I have it OR that the fibro gives me a condition that is pretty much the same thing, though it might scientifically need a separate diagnosis name.

    Another thing I run into is because I have the fibro/CFS diagnosis, they are lumping in my MG-style muscle weakness symptoms are just being part of the fibro/CFS. It may be, but I'm thinking that many fibro people don't get this part. They get more pain and soreness, I get more weakness instead.

    What I got diagnosed with was autonomic issues and Mestinon is supposed to help if you have autonomic problems that are autoimmune. Though other docs think that autonomic issues is a silly trashcan diagnosis.

    What you said about not noticing the difference in your mother... I have discussed this with others online, people with autonomic issues who are helped with Mestinon... the drug is strange, somehow it's very subtle yet very beneficial. Hard to explain how it can feel both ways. And then it has its side effects that are both subtle and big, somehow.

    Hm, DMAE is one ingredient in this supplement I've taken before, I wonder if the DMAE is a big part of why I like that supplement.

    I have brain fog so I'm not sure, but I think I don't do well with simply raising Acetylcholine levels... the Mestinon specifically makes the Ach go to the muscles, or something like that.
  4. voner

    voner New Member

    if I can remember right.....

    Robert Bennett, MD, & Kim Jones, Ph.D at the University of Oregon studied this. They hypothesized there was a dysfunction in the hgh (human growth hormone) /somatostatin balances.

    They theorize that somatostatin levels were too high and thus after exercise, growth hormone was inhibited and could not orchestrate muscle repair in fibromyalgia patients.....

    Their studies did not show any clinical reduction in pain levels...

    I took medicine and for a few years, and swore that it helped with post exertional malaise... I was much less fatigued in those days and my symptoms were much more pain related.

    that's about all I can tell you -- but if you search on the web you can find a lot more information about this.
  5. skeptik2

    skeptik2 Member

    I was diagnosed with FM and CFS in 1988 and 1989 respectively.

    In 2006 my right eyelid started closing on me; opthamalogist (sp!)
    diagnosed me with ocular MG. Neurologist put me on the
    pyridostigmine, which was Rx'd at 3x per day. Well 3x per day
    was waaaay too much and I had really bad reactions. So, I
    went to just one per day, and I have very little problems with
    the drooping eye unless I am really very very tired.

    However, now that I read this post, I realize that I have been
    feeling so much better this past year! This post makes me
    wonder if it is the med, as I feel stronger and have been able
    to do things without crashing badly afterwards. Could it be
    this medicine? If so, I am truly grateful for it, and hope it
    could be helpful to others with FM/CFS combos especially.

    Interesting post, thanks!

  6. elliespad

    elliespad Member

    Just wanted to add two more diagnosis that I know of that can cause droopy eyelids.

    1. Chronic Progressive External Ophthalmoplegia (CPEO) and

    2. Oculopharyngeal Muscular Dystrophy (OPMD)