Hi I have pots. I was told it is because I have EDS. I am reading with interest (but not quite understanding) about mast cell issues. For the past 10 years I have been having all sorts of strange rashes inc hives. I have what I think is liver spots on my chest and neck area. I also had one on my face which flared up and grew real big and was itchy. The doc didn’t have a clue what it was so he said it may be a solar keratosis (looked like small sarcoidosis to me). It swelled up for 3 weeks but has gone now and I am just left with the liver spot. I get hives for no reason and they are intensly itchy. I have small red blood spots over my legs and these are also in my mouth inside my lip and on my gums. I come up in strange circular red rashes too. I sometimes react in sun, tachy and headache, but put this down to pots. My kidneys are now not functioning how they should and I am being tested for thoracic outlet syndrome due to numbness, hyperaccusis, pain and vertigo amongst other things (I hope it is TOS).There must be something else going on than just EDS and Pots.
Dr. Clair Francomano.. I have heard that name before. I may have to see what I can do about an appointment with her. The Rheumy I saw a few weeks ago said I did not have the Vascular type, but I don’t know how much…If anything…he knowsd about EDS.