EMG tomorrow
 

ummmm... yay?;)

Bring a cake, and some music. Have some fun with it. ;)

Seriously, Brian, I hope it goes well. Pain can be useful, right? You are soooooo happy when it's over. :hug:

Annie

Actually I am looking forward to it. Not this test particularly but hopefully the results that come from it. I'm meeting with one of (if not the) leading MG researchers in Canada tomorrow to review my case and see what else can be done to get it into remission rather than maintenance mode.

Hey Brian,

Good luck tomorrow!:) I hope you get all the answers you are looking for. Take care and let us know how it went.;)

Big Hugs,
Pat

Are you by chance meeting with Dr. Nicolle in London, ON? He is the leading guy in this area - I'm lucky to have him as one of my prime caretakers... my neurologist (who also interned specializing in MG) referred me to him so I have both of them looking after me. :)

I am indeed. And from my research, you are indeed lucky to have him as your neuro. My primary neuro is not a MG specialist and he's currently out on stress leave because he's so overloaded looking after all the neurology patients in a very large area.

I'm lucky that my neuro knew the minute she saw me (with my eyes) that I had MG and she did the proper tests right away and got me onto mestinon.... then right away into Dr. Nicolle for verification and the emg etc. etc. I now see my reg neuro every 3 months and down to seeing Dr. Nicolle once a year - unless of course any problems pop up them they see me right away etc. etc. But Dr. Nicolle is the one who got me onto the type and schedule of meds etc. that I'm on now. So between the two docs I'm monitored well now. :)

I just started SCREAMING at my computer!!!! Dr. Nicolle's paper is like my MG "bible"!! I keep a copy in my purse -- just in case I need to educate any ER docs, EMTs, etc.

I would be talking the poor man's ear off!! Brian, I hope that you have a LONG, LONG appointment!!

WOW!!

Wow, that is so cool my doc is so well known and liked! :) He is great!

I know, Brian, I was trying to be nice. Deepak isn't high on my list, mainly because he acts like he is a self-proclaimed Guru. I heard him say on Larry King, quite proudly, that he has never been sick. As if he'll never get sick because he can "think" his way out of it. Good luck with that. ;)

Annie

I hear Dr. Niccole is great!
 

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! :)

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!

You really should ask to be referred to him! I was very blessed that my neurologist sent me to him right away... I woke up in Sept 2007 with double vision - by December 2007 I was in Dr. Nicolle's office. That was fast considering how sometimes appointments/referrals can take forever! And I have a huge folder of info he gave me that is wonderful.
I'm going to look for that book you mentioned to now! Thanks! :)

Good Luck! Hope there's terrific news for you.
Sue

My mother bought that.... my SIL is a nurse educator and she currently has it, I'm next in line for it :)

I've heard of her too, she's quite famous (as a researcher). The comments I've heard are "but Dr. Nicolle is the nice one" ??? :)

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:rolleyes:

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 :)

Good Luck with the appointment Brian, can't wait to hear all the details. :)

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.

All went well. It was not painful (well, a little... but no worse than getting a needle.) Nerve conduction study, neuro-muscular junction study and muscle study were all done. All show normal to above normal... :cool:

That's good news Brian. Glad it went so well with little pain.;)

Hugs,
Pat