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Has Anyone Else Been Prescibed Mestinon?


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Mestinon is a drug normally used to treat Myasthenia gravis. Has anyone else had experience with this medication?

I'm pretty sure what I have is Orthostatic Intolerance not Myasthenia gravis, but if the treatment helps, why not?

I was at the Neurological Institute at Columbia Presbyterian in NYC on Tuesday. Had an exam, they ran some bloodwork (something to do with amyloids?) and I'm taking a test for metanephrines. I'm going back in 6 weeks for some autonomic lab tests too.

I think my prior experience with total body irradiation and high dose chemo (for Leukemia) has them trying some unusual tests, or am I wrong and this is standard stuff for autonomic dysfunction?

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yep, i'm on mestinon for several years now and it does help me. had to built up slowly and now i'm taking 120mg 3 times a day. it's not my miracle med but i really can't do without it

hope your tests will give you more info on what's going on!

take care

corina <_<

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David-

I remember not that long ago that you were nervous about drivng and going to Columbia. What were your experiences like there? It seems you got in fairly quickly.

thank you for sharing your experience, it would help me a great deal

Noreen

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yep, i'm on mestinon for several years now and it does help me. had to built up slowly and now i'm taking 120mg 3 times a day. it's not my miracle med but i really can't do without it

hope your tests will give you more info on what's going on!

take care

corina <_<

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Mestinon is a drug normally used to treat Myasthenia gravis. Has anyone else had experience with this medication?

I'm pretty sure what I have is Orthostatic Intolerance not Myasthenia gravis, but if the treatment helps, why not?

I was at the Neurological Institute at Columbia Presbyterian in NYC on Tuesday. Had an exam, they ran some bloodwork (something to do with amyloids?) and I'm taking a test for metanephrines. I'm going back in 6 weeks for some autonomic lab tests too.

I think my prior experience with total body irradiation and high dose chemo (for Leukemia) has them trying some unusual tests, or am I wrong and this is standard stuff for autonomic dysfunction?

I got diarrhea when taking mestinon for OH, but I don't think this is a common side effect. I've had diarrhea with other meds so I think this is a 'me' reaction. Best of luck if you do take it, David.

Mary P

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Mestinon is a drug normally used to treat Myasthenia gravis. Has anyone else had experience with this medication?

I'm pretty sure what I have is Orthostatic Intolerance not Myasthenia gravis, but if the treatment helps, why not?

I was at the Neurological Institute at Columbia Presbyterian in NYC on Tuesday. Had an exam, they ran some bloodwork (something to do with amyloids?) and I'm taking a test for metanephrines. I'm going back in 6 weeks for some autonomic lab tests too.

I think my prior experience with total body irradiation and high dose chemo (for Leukemia) has them trying some unusual tests, or am I wrong and this is standard stuff for autonomic dysfunction?

I got diarrhea when taking mestinon for OH, but I don't think this is a common side effect. I've had diarrhea with other meds so I think this is a 'me' reaction. Best of luck if you do take it, David.

Mary P

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Dr. Grubb, the autonomic specialist in Toledo, Ohio, prescribed mestinon for my son about 4 years ago, and he has taken it since. He tolerates a relatively low dose (right now, 180 mg/day total), but it has been an important drug for him. Not a magic bullet, but it significantly improved his condition--he was virtually bed ridden before taking the mestinon. The GI motility factor actually worked in his favor: chronic constipation and delayed gastric emptying are other aspects of Dan's dysautonomia. Before the mestinon, his intestines had virtually stopped working. The mestinon has both given him some intestinal movement and helped with some other autonomic symptoms.

As others have said, this is a medication that you start slow with. It's also necessary to divide it into several doses spread over the course of the day--it stays in the system for just a few hours. That, of course, also makes it relatively easy to try: If you don't like the effects, you can stop taking the med and side effects will disappear pretty quickly.

On the other hand, mestinon is a nuisance med to take if you need small doses. It's a chalky pill that crumbles when you try to cut it, and the manufacturer doesn't make doses smaller than 60 mg. There's a liquid form but my son, who's pretty good at tolerating meds, found the taste appalling. So we put up with chopping the chalking pills. But get a pill cutter for these--there's just no way to snap them in half!

I hope the mestinon (or something else) works well for you! Debby

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David-

I remember not that long ago that you were nervous about drivng and going to Columbia. What were your experiences like there? It seems you got in fairly quickly.

thank you for sharing your experience, it would help me a great deal

Noreen

Noreen,

I made the appointment back in February to go to Columbia in late June. But fortunately their schedule opened up sooner.

Also fortunately I got a ride both ways door to door from a friend who fortuitously had to be in the city at the same time. I took Klonapin before I left to lessen any anxiety about the experience which seemed to help.

The staff at Columbia Presbyterian was friendly and I got to see the doctor almost immediately. He spent a lot of time with me and let me ask as many questions as I wanted without my feeling hurried. This isn't always the case in my experience. A lot of medical offices feel like mills where they are trying to see as many patients as possible in as short a time as possible.

I'm going back in June for more tests. And hopefully the Mestinon will help. Fingers are crossed.

Dave

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