What Tests Have U Done..?

[ladyt]

Hi every one..=)

I am ust so frustreded whit this dysautonomia stuff. had it for yrs and yrs.. And know so litle about it when it come down to it.. And the doc even less..

I was ust woundering what test have u taken..? an wich test are essential to pots/dysautonomia.?

I had the tilt a couple of times, thats how i got the diagnose.. But i dont know why, and a understnd that there is difrent types.. I try to read up on tha nett, but my brain is teflon, and i gett so very confused..

I have a nice cardio doc that i se once a year (somthing like that), he is the one that have actually tryed to help me, and but me on gutron.. But he only know and can do stuff for my hart and blodpressure.. he says the reason is probly in nerolygi (sorry missspelled)... So He told me to se a nerodoc. So i did, the first time she felt she had to litle info.. This time sha said right away that there where nothing she could do for me.. that cardio was the right doc for me..

And that she saw no indication for parkinson dissise, (neither do i, but something is very wrong).. And then she asked if i had queastions etc.. but i was a bitt put of by the start of the converastion.. I am gratfull that she read my journal etc.. But i know that there is lots of wrongs in it.. Docs are very bad listners, even the nice onse.. I skiped a hollyday to go on this appointment, she could ust have called me on the phone..

I feel so frustrated right know... Is there not anything to be don..? no way to find the reason why..?

So no its back to my gp, how coudnt care less.. My plan is to write down test I havnt done that are usefull and ask here to do them.. i am so sick of being my own doc... so sick of it...

[flop]

Hi Casper,

where abouts in Europe do you live?

Flop

[ladyt]

hi..

to the north of u..=) we are suposed to have the best healt care, and for some we do.. but not for me.. i am so tierd of being my own doc.. I know i know my health best, but i am not a doc.. i dont know maby i should ust surrender..But i do have a plan to get my overworked gp more involved.. So far all she whant is to gett me out of the office as fast as possible..

[mjan]

So sorry for ALL you have been going through. We do expect our docs to listen and know what to do..and..if not may think of someone else to see=a referral.

But.. this tells you how little training and knowledge so many lack. Not really their fault but still ..it does not feel good for YOU.

So..for any doc to acknowledge that is one thing.. to deny it or make up something that sounds right is wrong as well.

I wonder if you could do a search in your area on the computer??

What I did..once...was say a prayer to be guided to the right person... and it worked!!

Good luck..remember...WE care!!

Jan

[ladyt]

hi..=)

I think my cardio is the one that knows the most (where i live), and he does go on conferences on this topic.. Whit out him I would be totaly lost...

But i have so many questions, and very few answers. And even whit dealing whit symtoms docs are not really helpfull.. But i gess all i can do is keep trying.. And maby hope for some of the info on line will stick to my brain...

And i would really like to know why.. because it seems like there is a lot of reasons why people have pots/dys.. And if I know why maby it will be easyer to treat.. or maby not i gess... ...

So many of u that know why..?