Ontario, Canada - may be going for a second opinion on treatment
 

For those of you in Ontario, have any of you been to see Dr. Michael W. NICOLLE in London? Or, do you know of anybody who has been to see him?

My family is on me about getting a second opinion regarding my treatment to be sure I'm getting the best possible; there are no other neuro's where I live so Ontario is the next best spot for me to be looking and I'm hearing good things about him.

Hey Brennan,

I live in Toronto. I haven't heard of this doctor, but a nurse who I had met in the hospital who had MG lived in London, so she may have seen this doctor, but I know that she was also seeing my neurologist...

I see Dr. Vera Bril at Toronto General hospital. The University healthcare network is awesome because her clinic is right across the street from the Stem cell unit, which does PLEX. She's also just a few floors up from the IViG unit...One stop shopping, so-to-speek...Is it possible for you to get to Toronto. She's an expert when it comes to MG and Diabetic neuropathy (those are her two fields).

She does a lot of studies as well. She's currently doing one on whether PLEX is better for moderate/severe MG or IViG. Maybe you could take part in a study, if you wanted...But it might be sorta far for you to travel...lol


Nicky

Distance isn't a concern. London is 2.5 hours out of Grimsby where my brother and his family live, I'd be staying there if I went to see Dr. Nicolle anyway. He's an associate prof of neurology at Western specializing in MG... my aunt in Kingston has been looking into doctors for me to see and says he comes highly recommended by other doctors who deal in MG in ON. It'd always be nice to get first hand comments from others under his care though if you know what I mean.

I live in NB, a day and a bit drive to TO anyway (or a 3 hour flight).

That's cool...I took the liberty, since I had nothing else to do...teehee, of checking out his rating on ratemds.com...He got a pretty good rating, I think a 4/5, and seems to have very good bedside manner...That's good, because not all of the neurologists have that last one :winky:

Nicky

Hi Brennan,
If you live in NB you might look into Dr McKelvey in Nova Scotia. He was my first neurologist and diagnosed me pretty much immediately. He was a bit older (and that was 5 years ago - before I moved to Scotland) so I'm not sure how active he is in research etc but he at least knew what was going on with me. He aslo referred me to a nice young neuro in Halifax to do some testing but unfortunatley I can't remember his name.

I hope you find what you are looking for! Take care,
~Kathy

Dr. ratings website
 

Thanks for the link to www.ratemds.com.

I am currently trying to get a referral to Dr. Nicolle to see if I am on the right track with my treatment. From what I have read this doctor is very well known and is considered one of the leading "experts" on this disease. I live in Ontario and my neuro is in Hamilton. Take care and I hope you get to see Dr. Nicolle.

Maybe I will try to see this doctor too...I sometimes question my diagnosis based on the severity of my symptoms, plus, I have a lot of other symptoms that don't seem to fit the MG catagory completely...I'd like to be sure and get all of my questions answered...This doctor seems really good...my current neuro. doesn't really deal one-on-one with the patients and is very 'busy,' if you know what i mean...Check out the comments on ratemds.com, and you'll see what i mean...lol

Thanks Kathy,

I looked up Dr. McKelvey, it looks like he's another generalist like my own neuro. The intention behind all this is to be sure I've explored all treatment options; that's why I'm looking for a MG specialist. I'm currently on maintenance and not doing anything to improve the condition :rolleyes: It'd be nice to go into complete remission though.

My family doc happily referred me to Dr. Nicolle... not sure how long I'll need to wait to see him though.

Brian

Hi Brennan!
 

How are you feeling today?Are you still working those long hours?

I think it is so wise to explore ALL of your options - esp with this disease...........

Hope you are feeling GREAT!

Love,
ERin

How's the family?:hug:

I'm doing OK, working 9 hour shifts. Cannot do the gym anymore though. The cough is uncontrollable once I start exerting myself. We're looking into that, it looks like pulmonary fibrosis :( . No pneumonia or infection going on, CAT scan turned up a pile of scar tissue on my lungs though (radiation/previous pneumonias).

The family is doing GREAT though. They start school on Tuesday. My daughter is looking forward to it very much, my wife... not so much ;)

Hey Brennan!
 

9 hours? Wow! Are you enjoying it or is it wearing you out??

That stupid radiation really did a number on you. I really think you should write something about everything you've been through. I know for ME it has been so inspiring, b/c you are never bitter about it ~something that I personally find amazing!:D

You know, it's funny, but I ALWAYS hated it when Devon started school - really hated it! I cried every year (unbeknowngest) to Devon, of course - but I just HATED it when he was away from me.....HE of course loved it~LOL:D

I got the "green" light to visit Lilli on the 10th, so I wll be in upstate /ny for a few days...gotta see my girl!

Take care of yourself!
Erin:hug:

Yeah, 8 hours plus a 1 hour unpaid lunch... so in reality 9 hours ;) I like it a lot. We're coming into plague season around here though, I've got the ball rolling to start working from home so I can do my best to avoid the flus that will be flying around the office soon.

Radiation therapy sure did me in. Question always is was it worth it? I have to keep believing it was the right decision especially with how prone to recurrence thymomas are.

Glad you're getting a trip to see your niece :) Be careful and take it easy.

Colour me surprised. On Tuesday, Sep 8, I asked my family physician to get me a consult to see Dr. Nicolle. I'm seeing one of the leading experts and researchers of MG in Canada on Oct 28 :eek: :D :D :D I was longer than that to see a local neuro when we were first trying to figure out what was going on with me.

Hey Brian,

Wow, that was fast...good for you! Sorry to hear you are having these problems, but it looks like you'll be getting the best possible care soon. Maybe that Tia food is just around the corner! Take care and I'll be keeping good thoughts.;)

Hugs,
Pat

Thanks Pat.

My MG is very minor and well maintained with just Mestinon... my goal from this consult is to find out exactly how bad it is (EMG tests, etc.) and what else I can do for treatment rather than ride on maintenance. I want to be in remission :)

I'm very surprised at how quickly this consult moved though.

Hi Brennan!
 

Hi Brennan, good to hear from you! Am glad you're doing all you can to see a specialist in MG, do hope you find a really good one. Keep all of us updated on your progress!! We're here for u!

I originally was given a "likely" diagnosis of MG from Dr. Bril at Toronto General Hospital. After 3 years with little change in my condition or the diagnosis, my family physician suggested I get a second opinion from Dr. Nicolle in London Ontario. Both Dr. Bril and Dr. Nicolle are acknowledged leaders in this area of neurology. Dr. Nicolle said that my tests were negative and in his opinion I did not have MG.

I found both Dr. Bril and Dr. Nicolle to be excellent neurologists and at the top of their fields. The only difference I perceived was that Dr. Nicolle was more "hands on" than Dr. Bril, doing all of the interviewing, testing etc. himself, whereas Dr. Bril has a large clinic and support staff to carry out some of these matters. Dr. Nicolle had more of an individual approach compared to Dr. Bril's team approach. Both investigations were thorough and excellent in my opinion.

I have confidence in both of these excellent neurologists and would recommend either of them. I also suggest that a second opinion always be sought when a serious medical condition is diagnosed.