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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Tresa, I have some experience with this. I ended up in the ER winter of 08 cause of this in part. I sure will admit I dont know and dont think the docs do here yet which came first....chicken or the egg thing. When I went into ER in November of 08 I indeed was reducing my mestinon over manybe a month. I did this because #1 very cold weather had improved symp0toms. And #2 my body was acting 'like' the mestinon was too much. So I was down to 30mg not 60mg every 6 hours. The ER doc called my neuro and she said to go back up to 45mg and this did make me some better.
But I was leaving for Mayo that week and had a similar incident up there. I took extra mestion to literally get to the Clinic that morning. I was dizzy and woozy and had weird stuff going on. About a year later my internist said she felt I had POTS (postural orthostatic tacycardia syn). This was suggested not from ER visit but my daughter tellling doc I would get better after after IV fluids. My doc said increase salt intake (yes increase) and drink a gallon of water a day. It was amazing how jjust increasing salt can up my strength! And it wasnt as if I dont take in much salt. I'm a chip lover....it is my emotional eating thing. Since then I have found that little doses of mestinon are used for POTS (45mg per day). Now I saw a neuro for the POTS, not such a good one, and he didnt think I had it. But I still get these symptoms. Some of the symptoms of POTS can look like the anxiety if it is strongly physical. I know the doc didnt do all the needed tests. I think I have it or something similar. I have always had low BP. Very low. I dont know what to suggest. I just know that I wasnt having these symptoms 7 years ago. Making sure I have plenty of salt is a big issue I know now. I was cutting back on junk food when the ER visit happened. I hope you have a doc that can help advise you. Annie59 |
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