Mestonin

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Has anyone taken Mestonin, how did you feel? I started it a while ago but decided to stop was I was in the early stages of a relapse so it was impossible to know whether any symptoms were drug or relapse related.

I recently re-started and my arms feel different. I have this weird thing when I have a certain type of relapse coming on that I start sleeping a lot and then I have this weird feeling in my arms. It’s my warning sign.

Since being on mestonin my arms feel odd, the drug works on small fibre neuropathies so I have no idea if it’s a sign it’s doing some good and more communication is going on or if it’s an unwanted side effect. I was mostly on it for my bowel but hoped it would help with all the ME symptoms that can be attributed to small fibre neuropathies.

Has anyone else had this when starting it?
 
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The search function on PR is quite useful. There have been a number of threads on PR in the past year on Mestinon. Here is a link to all threads with Mestinon in the title.
https://forums.phoenixrising.me/search/55490/?q=mestinon&c[title_only]=1&o=date

You don't say what dose you are taking. It seems to be a drug that you start low and increase slowly. e.g. 15mg and increase at weekly intervals would be conservative. It can take a while for your body to get used to the drug. This is the first time I've heard it given for bowel........... Have you researched it's use for your bowel condition to make sure it is the right drug? It's normally given for myasthenia gravis or forms of congenital myasthenic syndrome (muscle weakness) and more recently off-label for POTS/autonomic symptoms.

If you already have enough acetylcholine in your body then making more with Mestinon could have a negative effect.
 
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Inara

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This is the first time I've heard it given for bowel...........
A doctor of mine only knew Mestinon as a laxative in case of intoxications. Mestinon has effects on the parasympathetic nervous system which causes all the side effects related to the stomach, the gut, the eyes, sweating etc, including diarrhea. Some people who have constipation might gain from this.

the drug works on small fibre neuropathies
In which way, can you explain?