Hi Everyone,
My rheumy referred me to be tested for MCAS, at USC in Los Angeles. I work as a personal trainer, and work out fairly hard, and get sick 70% of the time following my workouts, which is common with MCAS. That along with a POTS diagnosis lead my Drs. to suspect mast cell syndrome. My tryptase levels came back normal but my histamine levels were extremely high. All specific allergens were negative. The allergist said this confirmed her suspicions and she diagnosed me with MCAS. She went on to further state that it is extremely common in people with autoimmune diseases and POTS. She said that she suspects a lot more people are going to be diagnosed with it now that they have the tests and knowledge to identify it. They started me on a medication called sodium cromolyn along with Zyrtec and Pepcid ac. I know wonder what symptoms are Sjogrens related and what is being caused by this? I was skeptical about the diagnosis at first, because I never heard of this diagnosis. Any other people here diagnosed with this? What has been your experience? What are your symptoms? I get this weird adrenaline, flight or fight type rush, that she said is common with MCAS? Thanks in advance. I hope you all are well.
I do not have this but I know of a gal that does. It runs in her family. If I remember correctly, she lost one brother to this disease. I believe that she carries an epi pen in case of a bad reaction. She also has an effective face mask that she wears when out in public. She told me that it runs in her family. Here in Minneapolis she has had a very hard time finding and keeping doctors. She is on a very strict diet. I hope that you find what works for you. It is not something that I would want to deal with. Good Luck!
Hello
Jazzlover who posts within the forum had this and is a keen advocate for diet.
There appear like many conditions to be different degrees of this, hopefully you will not need to wear a mask as with the person Joe described. I get the feeling from what I have read that epi pens are advised in case things get difficult but diet seems to help some folk.
Good luck
Honeybee x
Hi,
Thanks for the response. I think everyone is confusing mastocytosis with MCAS. Mastocytosis is a rare bone marrow disorder. Most people do not have this. Most autoimmune patients have MCAS along with POTS.