Since there are so many new members and Mestinon (pyridostigmine) such a common treatment, I would like to remind all posters about its place in our treatment plans. Some people have difficulty taking it due to unusual sensitivity to its known side effects and there are occasional nonresponders. Although it is "symptomatic" treatment, it is not like aspirin. Aspirin allows you to block pain signals and continue to function despite the warnings. Mestinon interferes with the normal extremely fast breakdown of acetylcholine, allowing it to stick around just a bit longer to find a functional muscle receptor. It allows you to bypass an abnormal situation to allow for normal functioning.

We all know that muscles that are stimulated to function tend to remain robust or increase in size--look at sports figures or body builders for example. When muscles are not used they atrophy, decrease in size and function ( "use it or lose it" ). Mestinon not only gives us more time for muscle fiber contraction, the contraction itself keeps our joints stable and muscles in better condition.

If our MG is very active and the receptors are nonfunctional due to antibodies, acetylcholine will not get through to those muscle fibers no matter how much Mestinon we take.

If we have mostly functional receptors, it is possible that Mestinon alone can treat the symptoms of our disease until we get better spontaneously or worse, which is sadly the most likely progression. There is more information about the drug in the links discussion under "mestinon." b.

Thanks Beth.

At my worst, I was taking more and more Mestinon. My neuro (#2) never explained to me why it wasn't helping. I thought if i took more, it would help. It wasn't until I started ivig that I was able to rebuild some muscle strength. I found out last night when I tried to get into an SUV that my right leg is pretty weak . Bang! Right into the side of the car.
Thanks, Beth, and be well,

Here is the link that works--http://www.dailystrength.org/groups/myasthenia-gravis-links-and-news
(I hope. When we copy something that has a link in it, the link may or may not work.. If we copy directly from the URL we have a much better chance.) b.

I am bumping this up. I do this about once a week. During the past week we have had questions about IVIG, fasciculation (twitching) and muscle cramping, use of mestinon, and immunosuppressants, and reports of research studies.

Please feel free to use the links group to answer some of these questions, it takes you to prior discussions as well as scientific papers and research articles. It is the only way we have of highlighting a particularly helpful discussion or paper since things slide off the main page. Please continue discussions and questions about these topics, the links group is only here to provide the links we have found helpful in an accessible way (hiding it in the bottom right hand corner of the main page is the best we can do, please join so it remains there :-) )

elinor recently contributed a link to a paper on HLA and antibody titers and Marina's research needs to be added. Don't be shy about posting in the links group when a particularly interesting paper or discussion catches your interest. If you have problems, one of the administrators can help. At this time there are three pages. b.

Thanks b - for bumping this up the discussion list!

Thanks, Beth. I was just reading some of the best information I have found to date on esophageal function that you have posted in the links. Helped me to get a better understanding of my swallowing problems.

Thanks for the info Beth, I'll be checkingout even more of the group soon. The Manual for Healthcare Providers is great!
~Marina