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?

Annie
 

Thanks for that.

I think it was you that said ( if Im not I aplogise to the person that said it) "Drs are the only profession in the world where they can say I don't know and walk away from a patient and still draw a pay check" (Im paraphrasing). Its become one of my dads favourite sayings. Im incredulous to understand why Im being treated this way and horrified to learn that Im not alone.

I went onto the site that you posted the link for. They are so thorough going through your familiy tree etc and taking an acurate history. Plus seeing a cardiologist etc. Ive never seen one. The pulmanologist is the one that told me I could be a free diver as I could hold my breath for so long LOL!!

My parents are staying close by for a couple of days so I will talk to them about it. I will certainly e-mail the guy to see if he can help me.

Thanks again

Love
Rach:hug:

Rach73,
So, so sorry for what you have gone through. You have really tried so hard. Maybe France will be the right place for you to get some help. Hang in there and don't give up. Take care.
ckitty:hug:

Rach, as french is my mother tongue, if I could be of any help should you need translation or verification of translation, etc…, you can use PM to contact me.
Maurice.

Maurice,
 

Thank you so much for your kind offer of help.

At the moment I need to speak to my parents as they would be the ones helping me get to France. Hubby would have to stay at home due to our three large dogs.

Its also a difficult time here for me as my disabled sister is about to have a baby (8wks) and will need all the support she can get as her husband is in the armed forces and will be on a tour of duty. So as you can see things are a little complicated.

Im very excited by the idea of the french clinic.

Thank you everyone for their help.

Love
Rach x

help composing e-mail
 

Hi,

I've just spoken to my parents and my dad has said they will take me to France, basically I think he'd be clueless with a new born baby LOL!

Ok, my brain is not working Im not very well today my eyes are struggling to follow things, can't watch TV etc so this will be very short. I need suggestions on what to put in my opening e-mail to the professor. Any suggestions appreciated as Im drawing a blank here!

Thank you all so much for your help, and Maurice I will be taking you up on the offer to translate as I will send an English and French version to be polite. I hope thats still ok?

Thanks
Rach x:grouphug:

Rach, I think keeping it as short and brief and formal as possible is the best way to go. Don't offer up a lot of details. Just say that you would like a second opinion on your condition, which consists of fatigable ptosis, generalized weakness, oxygen stats dropping into the 80's, etc. And then ask if they can see you and do testing to figure it out.

Really, you don't have to say any more than that. Let the doctor take the lead. You'll probably get a response within 24 hours.

Annie

Hi Rach!
 

Hi sweetheart! I am sooooo happy for you! Finally, a light @ the end of the tunnel! :D

I just KNOW you are going to find the right dr and get diagnosed with MG! Whoo-hoo!:D

I am so happy for you, sweetheart!:hug:

Big hugs!
Erin:hug::hug::hug:

just an update
 

Just to let you know that we have sent the email to france today.Once we hear something we will let you know.

Thanks to everyone for their help.

Love
Rach x

Hi Rach,

glad to hear the email is on its way, hope everything goes the way you want it to.

Kate

Excellent! Hope you hear something soon about getting an appointment.
Sue

Terrific! Hope you get a positive reply soon. Take care and hang in there.;)

Hugs,
Pat

That's great, Rach! I hope that the docs. in France can call it what it is, and you at least don't have to worry about having a shroud of mystery around the nature of your ailment on top of having to deal with the everyday irritating symptoms!

Let us know how things go, and let's hope that you can get some better treatment!

Nicky:hug:

Rach,
Hope all goes smoothly now for you. Keep in touch.
Hugs,
Simon

hi
 

Just to let you know, I had a response from the Prof, hes off from the 8th -31st August. Which I was expecting as Paris shuts down basically in August.

Once I hear more I will let you know.

Thank you for all your positive messages.

Love
Rach

crossing fingers for you Rach
 

HI Rach!
 

Hi Erin
 

I wont hear anything until September, I had an email confirming that on Saturday.

Sorry I haven't been on for a few days. I came down with a Kidney infection which left me pretty weak and then on top of that I was allergic to the anti biotics they gave me and spent 24hrs vommiting and not being able to keep anything down. They have changed my antibiotics and Im feeling a little better. Although my back is still painful at least I dont have to pee all the time!

How are you?

Love
Rach

HI Rach!
 

Hey hon! I am feeling a bit weak, but that is b/c my "monthly" (actually twice monthly) visitor has decided to come early and that always kicks my butt - I know TMI!:D

At some point I'm just going to have bite the bullet and have my left ovary removed. I just don't want to think about that b/c I am only 35 and would give almost anything for Mike and I to have a baby of our own. I'd also love to adopt or foster but don't know if the state would let me due to the MG.

Other than that, things are GREAT here! My boy is finally home - finally! I have missed him sooo much! I keep going into his room and smothering him with kisses......it is going to be so hard when he decides to leave home for college. He also wants to move to upstate NY now, but that is not an option until he is 18 - only a few months away.

Mike's cell isn;t working, so he has been borrowing a friend's phone, but I miss him as well. There is nothing better than being able to take care of my babies!

I would love to see you with your red hair! I just got mine trimmed yesterday - it had already grown a couple of inches in the last month and a half! pred works wonders for hair growth! LOL! i'd love to go red, but I don't think it would be a good look on me!:D

Mike will be HOME Sunday! Sunday! I can't wait! It is so hard when he is gone, but Devon is having a blast, and we have been having "Devon" days......I love that part!

You have to wait till Sept? Hate that "hurry up and wait" business, but I bet you are going to be soooo happy with the results!

Hope you feel even better soon!

Love,
Erin:D

Heyy
 

Hey Rach,

So sorry to hear of what has happened! It must be really tough, I too hate those docs treating us as if we're pretending all our symptoms. If we were all so good, think there's no need to have acting classes anymore. Lol.. The french doctors sound like a good idea, I too would do anything to get a better idea of what's going on. Just that resources are so tired.. Sigh.. But if you do go, let us all know how it goes!! Am so proud that you're doing all that you can. =)

Love,
Connie