update
 

As some of you will know I have written to Angela Vincent and the national hospital of neurology.

Today I recieved a reply from the national hospital of neurology. In the letter it says they can only see me via a referral from my gp or consultant. It states

"From your letter it does sound as though investigation and management has been entirely appropriate and would have followed the same lines that we would have undertaken in London.

I am very sorry not to be able to help further in this matter, but I do wish you all the best"

Well you can't say I didn't try! I just don't know what to do next.

Love
Rach:hug:

hugsss RACH... and more hugsssss, undx Sarah (living the pain and stumble or something just no one wants to figure out my something hehe)

Hi Rach!
 

Well, that bites.

Doctors do not like to go against the opinion of other doctors, even if the first doctor is wrong. Which is really a shame since so many of them are apparently wrong when it comes to MG. I'm not saying there aren't great doctors out there by why can't anyone see that you have a serious problem? Oxygen stats going as low as yours do are NOT NORMAL. Holding your breath, my bottom (I has the English version of that word but it got bleeped. Rhymes with farce.).

I'm really sorry if I gave you false hope about Dr. Vincent. She was so decent with me.

Maybe if you make a short list of what has been abnormal, like the O2 stats, the ptosis, etc. How can they ignore all of this? I'm with you Erin, I'm numb.

Rach, Do you have to go to France, where the docs there LOVE to show up the English docs, to get some help? Intitute De Myologie is the place.

http://www.institut-myologie.org/anglais/index.php

http://www.institut-myologie.org/ewb...esentation.php

Professeur Bruno Eymard does the clinical work there. They do have socialized medicine too. You know how the French and English like to one-up each other! ;)

Do NOT give up hope on getting help. What is going on with you is not normal. :grouphug:

Annie

I am sorry Rach. Truly Sorry. I know how it feels to be so sick and doctors just do not seem to want to help. I actually had a neuro tell me I was crazy, point blank. The only reason I finally got an actual dx was because that achr was positive once and that was barely. Just recently it was negative again! It just goes to prove how crazy this disease and our bodies are. Just dont give up. You will find the right doctor.:hug:

Big Hugs
Carrie

Hi Rach,
As indicated by Annie, Pr Eymard is well known (at least in France) for his skills in MG therapies.
Also as a complement, hereunder is an adress with telephone number and e-mail you could try to investigate your chances in getting opinion or advise from them:

CONSULTATION Adultes (75) **
Responsable : Pr Bertrand FONTAINE (Neurologue)
Adresse : GH Pitié Salpêtrière
Fédération de Neurologie
Bât. Castaigne
47-83 Boulevard de l'Hôpital
75013 PARIS Cedex 13
Tél. : 01 42 16 17 94
bertrand.fontaine@psl.ap-hop-paris.fr

** Centre de référence labellisé

Good luck!
Maurice.

Thanks for your kind words. Yesterday I felt very down, like another door had been slammed in my face.

I knew the Drs wouldn't write and tell me that they disagreed with the diagnosis or treatment, I just hoped that they would agree to see me. But thats not the process over here. The good thing is they didn't say they wouldn't see me.

The French thing sounds like a good idea! Its not just the drs that dislike each other! I think its possibly like the USA and Canadians or the Ozzies and the New Zelanders.

One question and does anybody else notice this....on moving around I get very short of breath and my pulse goes up massively, sometimes it feels like its going to come out of my throat. Does anyone else get this? I think its because my oxygen levels drop and that my heart is having to work so much harder to get oxygen around the body?

I will let you ponder on this one.

Thanks
Rach (the boff) :grouphug:

Rach, You don't even need an answer - you got it right. The heart rate going up is one of the first indications that you are not doing well. If you had an oximeter, you would probably see that your O2 stats are going down too.

Maurice, Thanks for putting that info up there. I was too tired to retrieve it last night.

Here's a tip about the French, and I'm being serious here. They like people who are "proper" and formal. That's why Americans are sometimes not received well over there. They like to have us treat them formally and then they feel we respect them. It's often the opposite over here, where informality is more accepted. But, hey, you probably already knew that too! ;)

So start learning some simple etiquette like Bon Jour, Merci Beaucoup, etc. Even though Pr. Eymard speaks English, I'll bet he would like you to make an effort. :hug: If you end up going, that is.

Annie

Hi Maurice,

Thank you so much for putting the info on here for me, I really appreciate it. Its so very kind of you.

Annie- thanks for letting me know that Im on the right track. Its been happening for a while. Well since I last had the pulse ox on in May and held my breath (heavy sarcasm!)

I really dont know what I would do without the forum. Thanks again for everyones support.

Love
Rach:grouphug:

Rach, You could always go to one of those free translation sites and translate English to French if you email them. Maybe send both versions. I bet they'd appreciate that!

And Pr. Eymard can run a couple of the main CMS blood tests too.

http://www.freetranslation.com/

It doesn't provide an "exact" translation but close enough.

You just hang in there. I have to believe things will be okay. I am worried about your health in the meantime though! Geez, a person doesn't have to "convince" an auto mechanic to fix their car or a plumber to fix the pipes in their house. Why do we have to do so much convincing with doctors to "fix" us?