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Senior Member
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Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Senior Member
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Welcome MarciaD
Hello and WELCOME to neurotalk! You are gonna LOVE it here! So many different points of view and so many smart and caring people! It is awesome!
Fatigue is common with MG - this waxes and wanes - there will be days when you feel AMAZING followed by days when getting off the sofa/bed seem impossible.........once you are on the RIGHT amt of meds it does even out = though it does take a bit of time!
Mestinon usually works for me within 20-30 min or so. I am also on pred - need it in order to survive........
Sounds like you need to "up" your meds or have IV IG or the plasma exchange done - they are wonderful for most of us!
Tell your dr that the mestinon just isn't cutting it and you need additional help!
 Erin
Quote:
Originally Posted by MarciaD
I'm new here and lucked onto this site. I was put on mestonin about 2 weeks ago by my neuro. My acetylcholine test came back negative and was through the EMG with upper leg muscles being weak. I have the double vision, droopy eyelids and weak eye muscles. There are days when I'm so fatigued I don't feel like doing anything. My doctor wants me to have a MUSK test. He's positive I have MD and wanted to put me on the drug to see if it helps. I started out with 1/2 a pill twice a day for a week and now am on 1 pill twice a day. Some days my eyes twitch and others they don't. My eyelids are still droopy. I was wondering how long till this mestonin takes to work. I'm suppose to call my neuro after using it 30 days to let him know if it's working or not. When walking up steps it feels like I have cement blocks on my feet. I've noticed the mestonin helps that on some days.
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Erin
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