Autonomic Vacular Disorder

[jq2]

I'm not sure I'm in the right forum but here's my problem.
My wife has been recently diagnosed with an Autonomic Vascular Disorder. She's taking Toprol and Fludrocortisone to keep her bp from bottoming out and heart rate from racing.
She still has a "brain fog" and alot of weakness with muscle aches and fatigue and is unable to work.
The endocronologist just washed his hands of this and doesn't know any specialist who deals with this disorder. We live in the Philly area and don't know where to turn. We're are very frustrated and losing hope for answers. All tests have come back negative which is good but still dosen't tell us what's going on.
We are in our early 40's and have 3 young kids and this is affecting all of our lives and my job.
Please, any help or direction is appriciated.

[Annie62]

Hi Jq2,

I am not a medical person (you might want to try posting on the doctor-patient forum as well) but I do have autonomic neuropathy-which it sounds like your wife has since she has been told she has an "autonomic-vascular" disorder.  Has she seen a neurologist yet?  I'm surprised the endocrin. didn't refer her to one.  Since you live in the Phila. area you might want to check out the Univ. of Penn. to see if they have an autonomic disorders lab and a neuro who specializes in autonomic dysfunction.  I also spent years (about 13 to be exact) with all tests coming back negative, but that is because autonomic neuropathy isn't picked up on the routine neuro testing done.  Specialized testing is done in an autonomic lab-there is a test called tilt table (you might even be able to have that done locally at your hospital) that measures pulse and BP responses to stress/different body positions, etc.  There is a disorder called POTS (postural orthostatic tachycardia syndrome) that involves low BP after standing and a rapid pulse (not sure of the particulars) --and possibly your wife has that going on.  It is a type of autonomic neuropathy.  They do the tilt table test to dx it.  If you are willing to travel (though since you live near the Univ of PA it's probably unnecessary--and possibly your wife's auton. neuropathy is limited to heart rate and BP issues and not involving multiple systems as mine does), Mayo in Minnesota is supposed to have a good subspecialty in autonomic dysfunction and possibly the Cleveland Clinic (which would be closer to you) as well.  There are drugs used to try to regulate the BP and pulse in POTS if that is what she has.  Not sure how effective they are, though.  

I'm curious, does your wife have any other symptoms?  You did mention muscle aches, weakness and fatigue, but does she have any bladder (retention or urge incontinence), bowel or stomach (after-meal pain and  bloating), sweating (hypo- or hyper-), swallowing, or other issues?  

Please let me know what you find out.  Not many people on this board have autonomic neuropathy issues, so I am always willing to learn from others/share my experience.

[kitlyn]

HI : Annie wrote you a wonderful post here, I have MVP< and in summer of this year i got this head pressure, the neurologist thpught maybe brain tumor w spots on brain, then ruled that out after 5 longg months, and now being tested for MS but was tested for vasculitis,and then the ACNA test was negative for that plus others, I get burning in legs and feet ., (terrible hot inside body like i am burning inside, weakness , head pressure , dizziness and swallling   weird feeling, etc.. I have an appt at U Of Penn w ms people in April, and iw ills ee, but it sound like you need to be aggressive w the DR's w your wife, don't just settle .. Yes U of Penn is good, I started at Temple in Philly, iam also from Philly. Peace.

[Annie62]

My oversight-went back and saw that your wife is already on drugs for her BP and heart rate.  I would read all you can on POTS if I were you and see if you think it fits as well as make an appnt. with a neurologist who preferably specializes in autonomic dysfunction.

[jq2]

Hi Annie and Kitlyn  thanks for the great replies.
Yes, she has been diagnosed with POTS and does have that burning feeling especialy in her feet but does not have the incontenance problem.
Can either of you recommend a doctor at U of Penn ?

I did try the Doctor to Patient forum but it kept saying to try at a later time.

Thanks,

jq2

[Annie62]

I am not from that area, just know that the Univ. of PA Med. School has a good reputation.  You could type in Univ. of PA (or whatever hospital is associated with it--you or Kitlyn would know) and autonomic dysfunction/neuropathy--that is what I did when I researched Mayo in Florida-- and see if they have a neurologist who specializes in autonomic dysfunction there.  They might want to do further testing on her since she has other symptoms or might have more to offer in the way of treatment for her POTS.  Good luck to you.