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muscle weakness/mestinon


ariella
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Hi everyone,

there's been a lot of discussion about mestinon and a lot of discussion about muscle weakness lately here on this site. Since I'm currently being evaluated for a neuromuscular disease that is probably unrelated to the dysautonomia, just thought I'd pass along some info I picked up on the MG forum...Just read that mestinon can first cause muscle weakness in those who take it who don't need it for its muscle-strengthening qualities. In fact, it's used as a diagnostic in myasthenia gravis, if the drug improves muscle strength, it is further evidence that the patient has myasthenia. Those who are taking mestinon and are feeling weakened muscles may want to check this out with their doctor.

Ariella

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I was diagnosic with myasthenia Gravis when I was 12 and was really sick for about 2-3 years. I have been asymetic for about 8 years now. When I got diagnosic with POTS (beginning of this month). They put me on Mestinon again. (I had already tried Florinef and Midodrine when they didn't know what was wrong with no relief of symptoms). I began getting really weak and all the POTS symptoms started acting up... I got to the point with I couldn't even sit up and bearly able to breathe laying down because I was so weak and going in and out of consicousness laying down and I was having to be reminding to breathe. ANYWAY to say the least. They told me to STOP the mestinon and I'm feeling a lot better. I can sit up without a problem now I'm working on standing and taking a few steps again (still having time with that but it's coming slowly but surely).

But ALL that TO SAY - At least I know I'm good to GO on the Myasthenia :blink: and I really appreciate you passing the info along! Thanks Ariella!

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deeplyset,

I think that's why my doctor is reluctant to do a mestinon trial, scared to see how I may react, being that the dysautonomia is unpredictable and the midodrine is not as effective as it used to be. I think that by me the two feed off eachother, if I'm weakened from one, the other will come in for the final punch. Know the feeling of drifting in and out of consciousness. Very scary, especially when accompanied by shortness of breath.

By the way, florinef is on the list of drugs that myasthenics may not have. Interestingly, I took it for the dysautonomia before they started evaluating me for MG and it made my muscle weakness and fatigue intolerable. It is the one time since I got sick, and this has been years, that I was crying to my friend that I would rather drop dead than deal with this. Not a good space to occupy.

All the best,

Ariella

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Since I've been asymetic for so long my doctors, I guess, have just stopped looking at those list :( . I didn't have any problems other then swelling and weight gain. I didn't see any change in my POTS symptoms unfortunately. I couldn't image handling the MG and POTS at the same time... I'm Blessed. The mestinon for me definitely was a bad experience. The drifting out of consciousness thing was a first for me. AND it really did scare me.

Right now, my doctors aren't trying anything with me... Just salt and water... Ibprofen seems to help me a lot but unfortunately I am getting the side effects of it. What are they using on you for treatment, if you don't mind sharing?

I mean coming from a Myasthenic and POTS patient it may be helpful with me...

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hi again,

first of all, I have not yet been diagnosed with myasthenia, I'm in the process of being evaluated for it. I have severe muscle weakness that is myasthenia-like. The autonomic dysfunction had been going on and misdiagnosed for 11 years...it was only properly diagnosed a few months ago..., and it was confusing diagnosis when my muscle symptoms started 3 years ago. So, until I get a proper diagnosis, and that might take some time, the POTS doc just has me on a low dose of midodrine, which honestly is hardly working anymore. I'm getting by with the help of some caring friends, and laying very very low. Easier said than done, I have five young children :(

Ariella

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