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

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

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.

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

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

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

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

I am so happy for you, sweetheart!

Big hugs!
Erin

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