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.
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.
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.