Pure Autonomic Failure

Hello I'm looking for contact with others (PAF) Pure Autonomic Failure have this disease has been discovered since 2001 in the Vu-ziekhuis in Amsterdam.
I live in Andijk in North Holland and I'm 52 years old and am a woman (I think (:-) married and have 1 daughter who no longer lives at home, but together with a friend living in Alkmaar.
Where I have a very good relationship with you.

Are there others like me, or is there another forum where I can connect.

Groetjes Dancingwithferrets (long word he)

[DizzyJ]

I also have PAF, I live in Texas,USA. I was diagnosed with the disease in 2006 but have had symptoms all my life. My doctors think I was born with POTS and then progressed to PAF.

I also have contact with 3 other people who were diagnosed with PAF.

[Dancingwithferrets]

Hi Dizzy,
I have in the past have found someone here in the Netherlands, but that contact is not become her condition was much beterder than mine, believe them at any given time we have lost contact, in those days of 2002 and 2003 I was very bad and completely wheelchair bound, my intestines have stopped for almost 2 months, I also had problems with my stomach (still is but one piece beterder) blood pressure was extremely low, fall away, dizzy, swallowing problems, balance problems, etc.etc.
Since 2005 is pretty good, can still walk about 100 meters reasonable, I also go bike riding my Honda Goldwing with a sidecar, gardening, breeding of ferrets
All I have thanks to the L-Dops that I now from that time swallowing, according to my internist and neurologist, I am the only PAF in the Netherlands who swallows it is very difficult to come. My insurance pay for this because it is very duur.buiten that I get every month and every vitamin B12 injection 1 week Aranesp and mud I Florinef 2 tabl, since then I have no bladder inflammation more because I Cotromoxol every day sludge,
I have check every 3 months with my internist and neurologist at the VU Amsterdam.
I use the wheelchair in house and for larger distances, I can not last long and far, but I do not mind.
I have multiple medications that I use like this to let.

[DizzyJ]

It's very nice to  meet you. If you want to compare symptoms or treatment plans just let me know. I do not mind discussing it if it might help someone else.