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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | ||
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Member
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Hi there!
I was wondering how your conversation with your neuro went, and also checking to see if you got the private message I sent with info on docs down there. Hope you're doing reasonably well. I'll keeping checking back on you. Take care. ![]()
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Becky |
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#2 | ||
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Junior Member
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Hey! I'm sorry, I have been away from a computer for a few days. I've made two posts from my phone but neither actually posted here. Not sure what happened! Just noticed it right now. I got the PM, thank you very much for the information. That neuro is about a 20-30 minute drive away, but in Texas, that's like a stone's throw. I will definitely be thinking about it.
I didn't hear back from my neuro until yesterday. She had one of the nurses there call me back even though I specifically asked that she do it. They said that the labs were nothing to be concerned about and that she would be ordering more tests in June when I have my F/U. Meanwhile, take my meds and business as usual. Not exactly what I wanted to hear, but it was kinda what I expected. I have been taking less meds than I normally had. She said I could take anywhere from 1-5 a day as needed..so been taking about 2 a day. I'm off of work this week so I'm just lounging around. Thank you very much for the checkup, really means a lot. I'll let you know if I decide to see that other doctor. It'd be awesome to see someone who isn't so busy. How are you doing? You been feeling any better? |
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#3 | ||
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Member
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I love the way some of these neuro's think we can all sit around for months waiting on them! We'd like to have lives, too! I'd love to see one of them put their life on hold under the same circumstances we have. You KNOW that wouldn't happen!! Sorry - I'll stop my rave now.
I have my new neuro, so I'm hopeful. Unfortunately, physically I'm going the wrong direction so far (a secondary condition I've had that no one could figure out), but this doc is really on it! She mentioned polyneuropathy and ordered some prelim blood work when I saw her. I then looked the polyneuropathies up and, lo' and behold, I think we have a perfect match for my non-myasthenia symptoms in one of the forms. It's a very scary match, but knowlege is power and they can't effectively treat what they haven't identified so confirmation on this would be a step in the right direction. I hope you have a very restful, but fun, time off from work. ![]() Thanks for the response! We'll be keeping in touch. Quote:
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Becky |
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#4 | |||
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Senior Member
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Just checking in......How are you? Are you OK? Are you still strong? How is your family?
Hang in there! Big, big hugs! Erin ![]()
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Erin . |
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