Royal victoria hospital belfast teaching hospital
 

LINK
http://209.85.229.132/search?q=cache...&ct=clnk&gl=uk
OR SEARCH GOOGLE UNDER ROYAL VICTORIA HOSPITAL BELFAST

When I was confirmed as having myashenia gravis because it was a teaching hospital we were visited each day by different groups of students who were getting the opportunity to see a rare neuro disorder first hand .They got the opportunity to diagnosis your condition ,test each of the known symtoms and question you about your feelings.
The teaching co-ordinator printed for me and each of the students from wikipedia.org the following pages
1 WHAT IS MYASTHENIA GRAVIS
2 CLASSIFICATION
3 SIGNS AND SYMPTOMS
4 PATHOPHYSIOLOGY
5 DIAGNOSIS
6 ASSOCIATIONS
7 IN PREGNANCY
8 TREATMENT
9 PROGNOSIS
10 EPIDEMIOLOGY & MG INCHILDREN
11 NOTABLE PATIENTS
12 REFERENCES
13 EXTERNAL LINKS
**

Thank you for sharing :)

Not exactly sure WHAT is on wikipedia -- but, ever since I discovered that it could be edited by ANYONE -- I don't really trust the info 100%. Here are some guides that are PRIMO!!

http://www.uwo.ca/cns/resident/pocke...uscular/MG.pdf

http://www.myastheniagravis.org/guidedetails.htm

I ESPECIALLY "love" Dr. Nicolle's guide -- it covers just about everything!!

just a thought,
if it could be edited by anyone, why don't we start editing it?

alice

Alice, I think some MGers have tried that (editing Wikipedia) -- you get into a "tug of war". NOT all MGers "think" the same way -- believe it or not!!:D

You start having people dispensing medical advice -- and telling everyone that our condition is "totally" treatable with the proper medication. That ALL MGers can live totally "normal" lives. That kind of crap. (Can I say "crap" in here??):eek:

guess you are right.

and "crap" is OK with me.

alice

Me to!!!!

OOOHHH thats what I'm leading a normal life!!!!, which is why my Aunty just told me I sound breathless(oooppps sorry there's my sarcasm creeping back in again :-) )

Planet Mygra
 

I have to admit that I am not that great in geography and don't really know where it is.

but, possibly if you are somewhere in outer space, you may be able to meet a world leading expert in neuromuscular disease. I have every reason to think that he has been abducted by alliens, as more then 2 years ago, after he recieved the results of my tests, he wrote to me- your test results show of respiratory muscle insufficiency, and you would need to have a muscle biopsy, am in a hurry, but will definitely write to you next wednesday, when I return.

so there are two possibilities, either "next wednesday" hasn't arrived yet, or as I have said he could have been abducted by alliens, and maybe if you are lucky they have put him on your planet!

alice.

Alice, you have NO idea how much better you make me feel!!

BEFORE MG, I had such positive feelings about almost every doctor that I encountered. I never minded going to the doctor if I was sick -- was never intimidated -- or nervous. NOW, with all that has happened "thanks to MG", I have "white coat syndrome". My normal bp of 90/60 shoots up to 140/90! I even dread seeing my FAVORITE neuro -- who has done NOTHING but given me quality care and shown me every kindness. All of this "drama" thanks to a bunch of "ego-maniacs" at a BIG-NAME teaching hospital who treated me like a "number" -- a "number" without a brain -- a "number" without feelings -- a "number" without any purpose in life.

So, NOW I see that "they" even treat "their own" badly!!

I'm pretty sure your doc IS on planet MYGRA -- where he is the unwilling participant of a clinical trial -- bwah-ha-ha!!!;)

There are a handful of neuros (sorry, Alice) I would like to jettison into space. But the aliens would just come here to get away from them.

Is it because some neurologists are psychologist or psychiatrists and can't help but psychoanalyze patients? Is it because their specialty deals with the brain and that makes them superior? Or are they control freaks? Or is it because they are in fact are not secure and need to put patients down to feel that way? Or #5, all of the above?

Sorry, Patrick, we sometimes get carried away. Over here in the U.S., it takes one year or less for a man to be diagnosed with MG and SEVEN years on average for a woman to be. It makes us a little - okay A LOT - bonkers.

The sad thing is too that they all know each other. ALL of them, all over the world. They get together on a regular basis to discuss MG. Maybe they ought to invite some patients for one of those conferences.

Annie

You Guys Are So Funny
 

Wow, I never thought about editing Wikipedia. It's actually a brilliant idea. Too bad it wouldn't work. But maybe if we started a new wikepedia subject along the lines of "What Myasthenia Gravis Is Really Like To Have And Barriers We Find To Getting Treatment". Just a thought, but oh my fingers are itching!!!

As for your mg specialist, Alice, my best guess is that he disappeared into the galaxy called, "His Ego". As you can guess, no planet mygra there, although people often think there is a similar one called myas and in their naivete become hopeful, seeing so much tender care sent that way. In actuality, it's a planet named MyA** and it's the best protected planet in the universe - surrounded by vague, hazy clouds of words and herds of lawyers, administrators and residents running several rings around it.

Oops, hope I don't sound bitter. Just trying to keep a sense of humor. :)

Ally

Hi Annie what a wonderful day it is.
Why do you then pay these guys so much money when they don't provide you with the service you require.
Why does it take so long ?
You saw how quickly i was diagnosed by the local quack,sorry GP for short,or family doctor.
The Neuro specialist I saw,I believe did not get his diagnosis right.
The neuro diagnosed my condition as occular and not Bulbar.
However clearly I had gone to accident and emergency believing I was having a heart attack because of my very poor life style and the fact that at 223 LBs was almost 70LBs over weight.
I have since learned since coming to this site the nature of my conditionand its possible cause being extreme stress.
To cut a long story short through the property market I was shafted by a financial advisor ,his crooked solicitor and his equally crooked letting agent.
I bought twenty properties in two years which were all a problem for a varity of reasons which i will cover again as part of my life disclosure.
I needed to get my daughter (18)into University without her knowing what was going on.
I Therefore hid £3,000,000 debt from her.
She is now in University in her first year in music .
I am free now from the stress and even in my current state of health am already dealing with the problems i could not work on nor wanted to for the last three years.
I managed a Textile company for thirty years and as such I worked with people far smarter than me in their field .
I had the advantage by recognising that and finding what made them tick.
I was able to use this information to obtain the best from them.
This site and its people have so much to offer each other.
it is not just the friendship and support but you find out so much important information about your condition .
I have already applied to my new lifestyle many thing you have all raised
1. The nature of the conditiona and how to talk about it to specialists.
2 Food and how it effects your condition. YOUR CURRENT BODY.
3 The meds you take and how they work
4 BIGGIE THE VITAMINS YOU ARE MISSING.
I have asked for stickies on this section in a very poor way which I will correct .
These should be highlighting all the advice that we find works.
enough for now or this post will go on all morning(my biggist weakness.):)

anexcellent example by nicknerd
 

Hey Motorhead,

I've wondered that too....When I read that Manganese had actually shrunk some people's thymomas to the point that they didn't have one anymore and put their MG into remission, I asked both my neuro. and Surgeon about them...They both basically said that they've never heard of Manganese being helpful for MG/thymoma....It was bizarre considering it was actually a treatment at one point....:grouphug:

"Over here in the U.S., it takes one year or less for a man to be diagnosed with MG and SEVEN years on average for a woman to be. It makes us a little - okay A LOT - bonkers." Annie


WHAT!!!!!!!! Ok, so I am NOT paranoid!!!!

It took me about 5 months to be diagnosed, from start to finish, would have taken longer I rekon if not for my WONDERFUL optician, he continues to look after me and my eyes.

Over here in the U.S., it takes one year or less for a man to be diagnosed with MG and SEVEN years on average for a woman to be. It makes us a little - okay A LOT - bonkers.

Annie, I too think that's just an astonishing piece of information. Astonishing, but not surprising, if that makes any sense. It took me 8 years to get a diagnosis, so I guess I can at least claim that I'm above average. :)


Q: How many neurologists does it take to change a lightbulb?

A: None, there's nothing wrong with the lightbulb. Maybe you should see a psychiatrist. :ROTFLMAO:

I know, I know, there are some good neurologists out there . . . somewhere. I'm just kidding.

As for why neurologists love to throw out the psychiatric diagnoses to women, well, I think that's a very good question. I've also wondered if it's because they are certified by a neurology and psychiatry board. But the funny thing is that they don't seem to give very thoughtful psychiatric opinions and if they think their patients are really so crazy, wouldn't they send them off to get care? (Sorry, I know I'm generalizing here). Actually, their attitude reminds me less of trained psychiatrists and more like a freshman taking psych 101 who suddenly perceives that everyone they know is mentally ill! Do you know - are neurologists also really trained in pychiatry or is that they just share the same certifying board?

I've actually only had one neurologist actually come out and ask if I had seen a psychiatrist when I was trying to explain the terrible brain fog I had (now I'm pretty sure that was caused by the sleep apnea, but anyway . . .). I gave him a withering, don't you dare go there look (I'm a mom, I have that skill :D:icon_biggrin:) and he looked like he wished he hadn't said a thing. It was my pcp who insisted that I was depressed (and I've had the anxiety card thrown at me plenty of times - especially with the shaking arms and the high heart rate). Which is not to say that most neurologists didn't think I was crazy. Of course they did, I could see it on their faces. Which is such a weird feeling as I'm considered the calm, even, strong one in life - which also drives me nuts! Ha!

Ally