r76carson

Hi again sorry I've been distracted or a while. I saw Dr. Julie Khoury at OHSU Last summer. Had Autonomic testing and the results were consistent with autonomic neuropathy. But that's about all I got out of it. She was a very good doctor but could not offer me much in the way of treatment because I am resistant to taking prescription drugs because I am certain that's what led me down this road. My old doctor ( now fired ) was prescribing me drugs In higher amounts than recommended, that are known to cause POTS in a small percentage of people. Dr. Khoury thinks that is possible due to the lack of anything else being found in the rest of my test. And my new PCP is Quit certain of it. Putting all that aside there are only a few things they can test for. My understanding is, after reading every thing I could find on this condition there are a lot of different nerves that can be affected so symptoms vary widely from person to person. They don't have test for most of them. You just need to find a Doc that will listen to you and take you at your word that what your telling them is real and not imagined. That's the run around I got for over a year. Your anxious, Your depressed , Its all in your imagination. That's when I started doing my own research. I researched for months but couldn't' find any disease that fit until I got the flu with a high fever and realized I was not sweating anymore. Since I also Have peripheral neuropathy I ran a search on can neuropathy make you not sweat. And there it was Autonomic neuropathy, almost everything had been experiencing. Well that's my story I hope yours turns out to be a much better one. Good luck

I am also a newbie

I am from Oregon got my diagnoses at the Oregon health science university. OHSU In Portland they do the tilt table test there. Glad to hear from someone from my area. Wish you well

I have this problem in my feet. I also have peripheral neuropathy. I experience extreme nerve pain with it.

My bp usually drops while lying down or reclining all i have to do most of the time is setup. Very sickly strange feeling when my bp gets to low. Before i got my diagnosis I didn't think i was long for this world. I have come to terms with it most of the time and try not to get so distressed over it. Doc says it normal with my condition.