Mast Cell Activation Syndrome: What treatments help you?

Posted by rhawk314 @rhawk314, Jul 20, 2022

I was diagnosed with MCAs about 4 years ago. Since being diagnosed
I have received multiple treatments that either never worked or worked for a short period of time. My symptoms are pretty severe including hives, high blood pressure, Low Vitamin D3, memory loss, brain fog, sweating, flushing, Chronic diarrhea, stomach bloating , etc...
I have been treated with Xolair injections that seems to help for about 7 months until my body began to reject it. I have also tried Chromium. I take multiple anti-histamine daily with little to no effect.
I currently live in Los Angeles and finding a doctor that specializes in MCAS is almost impossible.
I was wondering if the MAYO Clinic in Arizona has any doctors that specialize in the treatment of MCAS.

Best regards, Robert

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

I know that the Mayo Clinic in Rochester has a mast cell program. They may have the largest program.
Google "The Mast Cell Disease Society." They have a list of centers. Arizona is not included. The website is tmsforacure.org
In California, Stanford is listed.
Good luck. We have a friend with this condition. She goes to Rochester Mayo.

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