No appropriate tests in my country (France)

[Helloworld]

Hello guys,

I'd like to share my struggle with you, to know if anyone is going through the same kind of things. I feel quite alone with my disease, and this loneliness is really affecting me.

I've been diagnosed with dysautonomia 2 years ago because I was lucky enough to find a good doctor, but I have been sick for at least 15 years (it just got worse).

But even if my doctor have been able to diagnose me, he doesn't know much about dysautonomia. Most french doctors barely heard the name before, and a lot doesn't even consider it as a disease (they say it's psychological). 

I've read "The dysautonomia project", and talked about it to my doctor. None of the relevant tests for dysautonomia are avalaible in France. I have a huge number of symptoms, but no way to know what is really going on in my body.

Hospitals could do the tilt table test, but to access it you need to prove that you're sick... with tests that doesn't exist here... This is so silly.

And when I talked about taking more salt or about some blood flow issues mentionned in the book, my doctor said things like "don't do this, it's too dangerous !" or "I don't believe it at all !". It's really confusing for me.

I managed to get better during the last few months thanks to chinese medicine, naturopathy and other alternative medicines, and by becoming a freelancer and working from home (I've become unable to manage a normal job.)

Can anyone relate to it ? 

 

 

[Pistol]

Hi  - yes, I can relate. I too had to struggle for a diagnosis and do a lot of research on my own. But to come to your problem - my sister lives in Germany and could not find anyone who knew anything about POTS. Finally she found a good PCP who took her symptoms serious and educated himself about POTS. However he was unable to test for it. So my sister came to the US and saw my POTS specialist last September and he not only diagnosed her but also recommended meds that have her helped tremendously. Now she follows up with her PCP but with the list of meds the Specialist recommended they can play around until the right mix is found. I hope you will find someone who will be open to POTS ! Don't give up.

[yogini]

Hi, there is one doctor in France and a few doctors in Germany listed here:

http://www.dysautonomiainternational.org/page.php?ID=14

[Helloworld]

Thanks a lot for your advices ! Sorry for my late answer, I thought I would receive notifications and I didn't.

I live close to Germany, but I don't speak german. If I'm lucky I'll find a doctor who speaks french or english