Mast cell activation syndrome is new to the medical profession – much newer than ME/CFS or FM. Diagnostic criteria were only proposed about five years ago and because most doctors don’t know about it, it’s rarely diagnosed.
But it can cause all the symptoms in the book and its proponents think it’s much, much commoner than thought. It’s also often associated with POTS, Ehlers-Danlos Syndrome, Post Treatment of Lyme Disease, and ME/CFS/FM. Dr. Klimas has called it one of the most interesting immune diseases going, and is one of the “septad” – the seven key characteristics of ME/CFS and similar diseases in Drs. Kaufman and Ruhoy’s conception.
Check it out in
Are You ‘Activated’? Mast Cell Activation Syndrome and ME/CFS/FM
My correct diagnosis is MCAS, Mast Cell Activation Syndrome, POTS, and EDS Type 3. They are often seen together. There is an amazing new book out, Never Bet Against Occam, which explains MCAS. I was initially diagnosed CFS and Fibro, but it’s really MCAS! It’s not as rare as some think. It’s rare to have doctors who have heard about it and know how to diagnose, unfortunately.
What are symptoms ??
I most likely have a mast cell activation disorder since age 2 and has led to many rare disorders. I have a Dr who doesn’t care, neglecting my health and it’s decline. Due to my complexity, my health is rapidly worsening and a Dr who refuses to provide the medical care I deserve and desperately need. I have contacted every foundation out there for help getting testing done before I decline any further with no luck. I am stuck and scared with no support.