@becsbuddy just wanted give you guys an update. After my son’s rheumatologist appt he called and spoke with his other doctors. They said not May-Thurner syndrome so they decided To put us in touch with a diagnostic doctor. Spent an hour with him. He suspects it isn’t vasculitis and never was, even 2 years ago when they said HSP bc he presented atypically, He thinks it is autonomic gangliopothy (spelling?). He is doing a full genetic blood panel for Alex. Sending the blood to Washington. Said it will take 4 + weeks for an answer. If this isn’t it then he has plan two. I really liked what he has to say. He was thorough and listened! Finally feel like forward progress is being made! Thanks for your support here!

Jump to this post