Hi Linda! I live in Ontario, Canada. I haven't been able to find someone else with this disease. It took 4 years to finally get diagnosed. The symptoms started to present themselves April, 2001. My Dr calls it PAF meaning pure autonomic failure, with having the dysautonomic syncope. I use to be hypotension but recently changed to hypertension with syncope after wearing the 24 hour blood pressure monitor. I had the tilt test done to determine this. I had a pacemaker put in March 2009. Now that wrecks my chances for future MRIs. This disease has caused a lot of other health problems. My Dr said in a nutshell, your brain is attacking your body. I don't have a neurologist anymore, as I was told there is no proactive way to beat this disease. My Dr has tried to find me a neuro, with no luck. I live with chronic pain daily. Thanks for listening:) Jo Ann Worrall
Sorry I hit the post button. I'm losing control of my fingers and hands some days. I also have chronic fatigue syndrome and I have to self catheter sometimes. I never know what is going to be affected one day to the next. I don't like taking all these meds every day. Of course chronic depression, why not lol. I know there are other things I have forgotten. Is nice to share with someone else :) Thank you again for listening!!