Autonomic dysfunctions

I’m sorry for not keeping up the blog. The past month or so has been a mess. I’ve been experiencing a decline in my autonomic function. I’m having a lot of trouble with my bladder–mainly urinary retention–requiring a few ER visits, multiple doctors and tests, and most awfully, catheters. (TMI?)

So right now I am waiting. Last week I had some testing done at EVMS by a world reknown doctor who does a ton of research. He did testing on my autonomic system. This includes sensory testing on my peripheries, testing on the blood flow in my feet, and stimulation testing on my heart rate and blood pressure. My good friend, Bobby came with me for the testing. He was laughing when I was setting off the heart rate alarms when I stood up. At least my heart rate was elevated during the testing. I always feel like things normalize when I see doctors and they don’t understand what I’m talking about. Not this time.

All that being said, I’m waiting for a decision. This guy is supposed to get back with my cardiologist and decide what to do. Fingers crossed they will come up with a treatment to try. Otherwise I’m headed back to the Mayo Clinic. Unfortunately, Johns Hopkins refused my case. Apparently, they don’t have an autonomic specialist there. One must wonder what in the world is wrong with them that Johns Hopkins does not have an adequate specialist–and actually refers you to the Mayo Clinic.

Sorry this is a quick update. I will keep you all posted on what they decide! Thank you for all the support.


5 Comments on “Autonomic dysfunctions

  1. So glad you’re up to posting. I think of you EVERYDAY! Am wishing the best for you!

      • What else are they looking for? POTS can cause a lot of stuff… as can a mixed dysautonomia… (I’m an RN, also- though disabled with dysautonomia since 2004- I was diagnosed in 1996). I’m also interested in the autoimmune connection- I’ve had one (rather pesky) intern suggest there had to be something that connected all of the diagnoses I had together… I wasn’t there for that at the time, and he annoyed me, but I’m interested in what other people are experiencing 🙂 I’ll go back and read more of your posts !

  2. OK… I read more- I’ll still be interested to see what they find out. I’m sure your docs are great- just throwing this out there…Vanderbilt in Nashville has a Dysautonomia unit… they cover POTS, NCS, etc. It’s all they do. 🙂

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