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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#11 | |||
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You're so lucky, Brian! I really want to see Dr. Niccole- I heard he's awesome and has great bedside manner...I'm seeing a different neurlogist here in Toronto....She's an expert on MG too, but doesn't really talk to her patients. I'd really like to see Dr. Niccole to see if there are other treatments I could try to get mine into remission...It's already hard for me to communicate because of my bulbar speech and it's that much harder when the neurologist doesn't seem interested or have the time to talk to their patients.
![]() I'm seeing the first neurologist I ever saw tomorrow to get some testing done on my hands...Maybe I'll ask him to refer me to Dr. Nicolle... Good luck! ![]() |
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#12 | |||
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P.S. I have a book that he edited by Deborah Cavel-Greant called, "You, Me and MG." It's a fantastic book...You guys should pick it up!
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"Thanks for this!" says: | Pat 110 (10-27-2009) |
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#13 | ||
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I'm going to look for that book you mentioned to now! Thanks! ![]() |
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"Thanks for this!" says: | Nicknerd (10-27-2009) |
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#14 | ||
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Good Luck! Hope there's terrific news for you.
Sue |
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#16 | ||
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#17 | |||
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Hahaha!
Yes, she's not that friendly...She's never been rude to me, well, she was rude 'about' me once because I came in without an appointment because I couldn't eat or talk for a week, and I overheard her yelling to her associates, "You mean, she honestly expects to just waltz in without an appointment?!! Please- I'm not seeing her- I'm too busy!!" I understand that it would be annoying for a patient to come in without an appointment, but there's no need to yell, especially when I can hear! lol I saw one of her associates that day, and he's always been pretty nice...He ended up calling me later that night to let me know that I had a thymoma and it looked like I might need chemo./radiation for it after it's taken out! :S Whenever I go in to see them for follow-up, I always only talk to the associates, and I'm 'allowed' to ask 3-questions for the head neurologist...They wont help me figure out what's up with my hands because they don't think it's MG-related, but it's clear that it's neurological, and they're neurologists so why can't they help with that too? Lol...It's totally weird. They also messed up the info. in my files a couple of times...They wrote that I had a pneumonothorax and this was why I was admitted to the hospital- but I never had that problem- I was admitted because I couldn't eat, talk or breath well...I have no idea why they thought I had a collapsed lung...It freaked me out when they told me that...lol...The other thing that seemed messed up was a month and a half after my thymoma was removed, I went for a follow-up and after I relayed my three questions (one of which was about my thymoma) to the associate, the head neurologist came in. She looked at the sheet, and asked, 'You had a thymoma?' LOL! She's nice enough, and is awesome when it comes to the electrical testing, from what I hear. She's just very short, and to-the-point...and plus the office puts the wrong diagnosis' in your file from time-to-time...lol ![]() |
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#18 | ||
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Nice... I must say, I've been recommended to her too... I'm glad I chose Dr. Nicolle. I'm also very glad to be able to visit family in Grimsby - 2 hours outside of London for this trip ![]() |
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#19 | ||
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Good Luck with the appointment Brian, can't wait to hear all the details.
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#20 | ||
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So any word yet? I Hope it wasn't too painful. The had to stop my when we got to the trapezeus muscles because I was such a spaz, and that was after 2 atavan.
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