Jump to content

POTS/SFN - cardiac autonomic neuropathy?


hopeforthecure

Recommended Posts

I just have a question that has come up after some research. I was diagnosed with POTS for sure about 8 months ago, but more recently with Small Fiber Neuropathy by biopsy at Cleveland Clinic. They also did another TTT there to be sure I had POTS. That confirmed it as it showed an increase in heart rate by over 35. My BP was pretty consistent throughout the test. I just have a question, is this cardiac autonomic neuropathy or does that just happen with diabetics? Somehow this came up in some research, but this comes up mostly with diabetics. Just want to know what to think of this as it looks more dire than just POTS. My SFN/POTS is due to sarcoidosis which they are not treating at this point because it's not active and research shows that steroids/other treatments are not helpful for it. She also said that insurance may not cover IVIG, but we could try, but not sure we want to go down that avenue yet.

Thanks!

Link to post
Share on other sites

Hi. I also got pretty freaked out when I read about CAN a few years ago, but it seems to be exclusive to diabetics. I may be wrong, but that's the impression I got. I know I had autonomic symptoms after glandular fever in 1984 and I only got diagnosed with POTS in 2014-15 and EDS in 2013. I am also pretty sure that I have MCAS/MCAD and maybe even raised Alpha-Tryptase...?? I am hoping to see some progress with diagnosis. I can't have SFN testing as two neurologists did not want to refer me. I am sure that I have it along with the autonomic neuropathy. I think the Alpha-Tryptase seems it could be genetic. All interesting stuff! 

Link to post
Share on other sites

Archived

This topic is now archived and is closed to further replies.

×
×
  • Create New...