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Back from Mayo


bamagirl

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Hello,

Back from Mayo and I saw Dr. Low. He was very nice. I had all the usual tests. Autonomic reflex test, sweat test, blood tests for antiganglionic antibiodies. My tests revealed that I have severe dysautonomia with small fiber neuropathy in both of my feet. My reflex test was normal except my foot didn't sweat, my TTT was normal except for a 20 point increase in HR while standing-my bp did fine. My sweat test was normal except for thr tops of my feet, hence the small fiber neuropathy. My antiganglionic antibody test was normal, my lying and standing catecholamines and norepinephrine was normal too. He basically said I didn't have just "POTS", that my autonomic nervous system was behaving badly and wanted me to take clonidine. I told him that my biggest problem is these horrible autonomic storms that leave me bedridden for days and weeks at a time. I go back next year as a research patient. I was disappointed that we couldn't find a reason for the cause. Although we did discover that it isn't autoimmune, isn't my hormones or catecholamines and norepinephrine, and I don't have autonomic failure or neuropathy. I also know it isn't genetic and I was not born with it. Has anyone found the cause of your POTS? Does anyone else have small fiber neuropathy or "burning feet"? Take care

bamagirl

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I am certain I was born with POTs as well.. and that there is some genetic things playing into things as well..

Um I get the burning in the bottom of my feet at times.. buring to the point that it makes my feet itch on the bottoms.. primarily in the arches of my feet...they also get sweaty .. yet ice cold to touch.. and feel like I ambeeing stung by bees in "spots".. clammy would be the word to describe the cold sweaty tootsie toe's..my palms of my hands get the same way too.. only they will aslo get very very HOT. and feel like they are literally buring up on fire..

glad that you got to go to the Mayo clinic. and that they were thurough on you.. but am sory that they dont know what is causing it. i "feel" your pain and frustration.. hang in there

HUgs

Linda

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I was seen at Mayo by Dr. Low last July and had the same tests. The purple test--- isn't that so hard to get through?!!! My results were all consistant with POTS though (catas up etc) and confirmed that it was just POTS going on. I had the same result with the purple test on my feet and I understand it is common for POTS and neuropathies, although I do not have burning in my feet. I did have, for quite awhile, burning in my left leg. It happened when I started feeling well, but then when POTS found me again it went away.

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Bamagirl

I also had the sweat test done at Mayo. My sweat test revealed a small fibre neuropathy in my R thigh, my forehead and both my feet also. Patchy areas on my thigh and forehead.

It's good that you got some answers and at least ruled out some of the possible causes.

Traci

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Guest tearose

welcome back bamagirl!

Yes, I too have the denervation but on both my legs and my abdomen.

Goodness yes, that was a heck of a test to endure! I thought I would be fried to a crisp when it was over! :lol:

How are you managing now?

best regards, tearose

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