I'm confused by recent tests.

[POTSie78]

For the past year and a half I've been treated for dysautonomia/POTS by my electrophysiologist who diagnosed me after doing a TTT and ruling out other cardiac issues.  Recently I went to Mayo and went through several tests.  They had me withold my medications for 2 days and did their autonomic reflex screen, exercise tolerance test and some bloodwork.  Everything is coming back normal now except I have exaggerated heart rate reaction to exercise, severe dyspnea, my aerobic capacity is below normal and now I have 5 different skin diagnosis??  My paraneoplastic panel and tryptase levels are normal.  I was not able to complete the 24 hour bp monitor because of faulty equipment. I am quite confused by these results and still waiting to hear what Mayo says is wrong with me.  Has anyone else experienced something like this?

[Pistol]

Hello @POTSie78 - I had an autonomic reflex test done 10 years ago at Vanderbilt, before my HPOTS diagnosis. The testing came back completely normal, yet I showed positive for NCS at my first TTT done in another facility. A year later I was diagnosed with HPOTS ( confirmed with neurotransmitter levels ). My 2 sisters that also suffer from POTS ( genetic in my family ) have tested normal on autonomic reflex testing as well, however their symptoms are highly suggestive for HPOTS, and they have both dysautonomia - one has HPOTS and one autonomic neuropathy. 

The reason I am letting you know this is b/c autonomic reflex testing can be normal yet you can still have POTS - as you can see on the testing in my family. I also know of other members on this forum that have been diagnosed with POTS per TTT but had normal autonomic testing. 

6 hours ago, POTSie78 said:

now I have 5 different skin diagnosis?

What type of diagnosis? Are you talking SFN?

[POTSie78]

11 hours ago, Pistol said:

Hello @POTSie78 - I had an autonomic reflex test done 10 years ago at Vanderbilt, before my HPOTS diagnosis. The testing came back completely normal, yet I showed positive for NCS at my first TTT done in another facility. A year later I was diagnosed with HPOTS ( confirmed with neurotransmitter levels ). My 2 sisters that also suffer from POTS ( genetic in my family ) have tested normal on autonomic reflex testing as well, however their symptoms are highly suggestive for HPOTS, and they have both dysautonomia - one has HPOTS and one autonomic neuropathy. 

The reason I am letting you know this is b/c autonomic reflex testing can be normal yet you can still have POTS - as you can see on the testing in my family. I also know of other members on this forum that have been diagnosed with POTS per TTT but had normal autonomic testing. 

What type of diagnosis? Are you talking SFN?

Thank you for the all the information.  I'm not sure what SFN is but the dermatologist at Mayo diagnosed me with ETR rosacea, spongiatic dermatitis,  hyperkeratosis, Scalp pruritis/foliculitis and some disorder with my all my nail beds. 

[Guest KiminOrlando]

SNF is Small Fiber Neuropathy. It doesn't sound like you were given that diagnosis. 

[POTSie78]

1 hour ago, KiminOrlando said:

SNF is Small Fiber Neuropathy. It doesn't sound like you were given that diagnosis. 

I don't have a diagnosis from Mayo yet other than from the dermatologist.   I am still waiting to see what the neurologist says about the tests he ran so far.  The information i have is from the notes that have been put in my file.  At this point I don't have a follow up appointment scheduled.