What is Myasthenia Gravis
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. At about 14 cases per 100,000 (in the U.S.), it is one of the lesser kno...
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Careful not to over-medicate with Mestinon
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When I was first diagnosed with MG. I was taking a number of doses of mestinon. two 60mg in the morning, one timespan at noon, two 60's at dinner time, and one timespan before going to bed.
For a long time it did the trick. Recently, however, I found that I really didn't feel quite with it. Felt as though I was in a haze, often felt distracted, had those stool problems. Just didn't feel quite right. I check with my Neuro and he reminded me that I should try to monitor my doses since if taking too much medication, you often find the same symptoms as taking too little. I decided to cut my meds to one 60 in the morning, one half timespan at noon, one 60 at dinner time, and one full timespan at bedtime. BOY, has that made a difference. All of those symptoms have virtually disappeared. I feel very much myself just about all the time. I am sure that I am not the only one who has done this. It seems that monitoring was definitely my solution. Posted on 11/08/09, 12:11 pm |
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Hi Ken
2 out of the 3 neuros i have been to have told me the same thing - too much cud be as bad as too little. Also, i would decide the right level by myself - in this case, the doc was NOT the best to judge. Good example is myself - I started with 3 x 30 mg/day, went to 4 x 60 mg/day and have now stabilized (self-decided) to 6 x 30 mg/day @ every 3 hours. I could take more as my eyes still suffer from dropping and diploplia - but if i take more pyridostigmine, i worry about my stomach. My stools are as it is pretty bad - i cant afford it to get worse. Rgds 
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Thanks for your response, RKK. I don't know if I could handle taking meds 6 times every day, but I guess it still comes down to monitoring ourselves and making the changes as we need them.
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Thanks for the reminder, KENJAY, too often we just take what the doc says to heart and never question or change a thing. My neuro is trying to take my Mestinon away because it just masks the symptoms (her words). I told her that since it took a year for the Imuran to work that I would very much like to keep my mask right now, thank you very much. She did increase my dosage from 3 60mg to 4 per day. I try not to take the last one if I'm going to bed early because it causes muscle twitches in me. Neuro says that is not possible, but you know what your body does when you take something. I've fooled around and not taking it at all, felt weak but no twitching, hmmmm. Personally, I don't think there are enough of us or research for them to really know.
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Hi reddutchgirl,
I also had twitiching of legs at night, and found it to be RLS (Restless Leg Syndrome) which I am told often accompanies MG. I am currently taking a Mirapex .5 mg at bed time, and that has done the trick.
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I wish it was just my legs twitching. lol Every muscle, even the ones in my stomach will twitch and twitch. Drives one a little nuts especially when the eyes join in on the dance. Neuro says I may need more testing, not right now thank you very much.
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The Doctor has only put me on Mestinon 60mg 5 times a day no other stuff and my weekness is still the same as before some times worse and now my speach is getting worse whats happening to me!!!!!! Im worried
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