bamagirl Posted February 22, 2006 Report Share Posted February 22, 2006 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 carebamagirl Quote Link to comment Share on other sites More sharing options...
Ernie Posted February 22, 2006 Report Share Posted February 22, 2006 Hi,Thanks for sharing your experience. You have an in-depth investigation! You seem to be a very rare bird.Mine is genetic and I was born with it. Hope that one day science will discover what mutation I have. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted February 23, 2006 Report Share Posted February 23, 2006 I'm sure I was born with mine and my feet burn like fire. Or they are ice cold and clammy, never normal. Glad you got some answers. morgan Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted February 23, 2006 Report Share Posted February 23, 2006 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 thereHUgsLinda Quote Link to comment Share on other sites More sharing options...
Kitsakatsa Posted February 23, 2006 Report Share Posted February 23, 2006 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. Quote Link to comment Share on other sites More sharing options...
mom4cem Posted February 23, 2006 Report Share Posted February 23, 2006 Hi Bamagirl,Glad you had the testing done and you received some answers. I hope the med works for you but this also gives you a dr. in your corner, who knows what is wrong and can now work with you with your meds etc. Quote Link to comment Share on other sites More sharing options...
Traci Posted February 23, 2006 Report Share Posted February 23, 2006 BamagirlI 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 Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted February 23, 2006 Report Share Posted February 23, 2006 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! How are you managing now?best regards, tearose Quote Link to comment Share on other sites More sharing options...
Radha Posted February 24, 2006 Report Share Posted February 24, 2006 its nice that you could have all these complicated tests, but did they say what to do to fix or help the denervation in the legs and abdomen, and how the burning in feet could be alleviated? any meds for this? glad that you got some answers, radha Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted February 24, 2006 Report Share Posted February 24, 2006 BamagirlI am glad you got to go to Mayo and Dr. Low was nice to you.We are pretty sure I was born with mine as my history DIRECTLY points to it in many ways. Quote Link to comment Share on other sites More sharing options...
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