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.

I also read about a test called I-MIBG-scintigraphy, which is imaging of the cardiac sympathetic innervation. Has anyone heard of it or had it done?

Thanks!

Hi hope

I'm not sure if there is a different between cardiac AN and PoTS but there may be blood tests for antibodies that can assess? I'm just guessing, could be totally barking up the wrong tree.

I do know a bit about MIBG scans but only because I know someone whose little boy (I think he was only 4) sadly had a type of cancer which is detected by the scans. They inject you and then you return for the scan.

I hope someone else can help you you soon more.