Mast Cell Activation Syndrome (MCAS): How to prepare for appointment?

@reesew07, you are in good hands at Mayo Clinic. If I am understanding correctly, you have symptoms that suggest you may have mast cell activation syndrome (MCAS), but the diagnosis has not yet been confirmed. Do I have that right?

"Diagnosing MCAS, which affects each patient uniquely, relies on a combination of the major and two minor diagnostic criteria set forth by the World Health Organization. ... Due to the lack of access to or limitations of traditional diagnostic approaches, affected patients often experience lengthy diagnostic odysseys." https://news.mayocliniclabs.com/immunology/mast-cell-activation-syndrome/

This article explains more about Mayo Clinic's "random urine test panel can also be used as an adjunct diagnostic test in scenarios where acute and baseline serum tryptase measurements cannot be readily attained."
- A simpler path to answers for patients with mast cell activation syndrome https://news.mayocliniclabs.com/2025/08/11/a-simpler-path-to-answers-for-patients-with-mast-cell-activation-syndrome/

I'm glad that you were able to get an appointment at Mayo Clinic so that they can help either confirm or rule out MCAS and help you find answers.

Which Mayo Clinic location will you be going to?

@colleenyoung Yes you have that correct. I will be going to the Scottsdale Mayo Clinic. Thank you for the information!

I want you to know that you are not alone. I hadn't heard of MCAS before coming to the chronic fatigue clinic in Mayo Rochester. It's helped me understand myself so much more and why I have allergic reactions to things Ive been tested, but am not allergic to. Best of luck!

@medicalunicorn
How did your appointment go at Mayo?

@jeff1047 The doctor was horrible and didn’t listen to me at all. I would not recommend going to Mayo Clinic allergy if your symptoms are complex.

@reesew07 oh no, that's so disappointing. When you are suffering and you get to see a professional who you hope is someone who can help, and then they don't listen, that's like a double hit.. I had a similar experience last month, trying to find a PCP who will at least TRY to help me sort out the complex situation I have been dealing with since 2022. I drove an hour to see her, filled out pages of paperwork, waited and when I finally got in to see her she was impatient, cut me off constantly and when we got to the end of the visit, I started to cry out of frustration, she opened the door, said "we're done, I'll walk you to the front' and left me sitting there in tears. Needless to say I never went back.. but it's soul crushing. I can say though I did not give up, I continued to look for a doctor and found a gastro doc who is new to my former GI's practice and I made an appointment, saw her and she was/is really trying to help. Please don't give up on getting help. Sending you loads of hope!!

@jgk177 Yes it is very frustrating! I got another opinion coming up on Wednesday. I’m hoping he will listen and is really good because it is an hour drive for me without traffic.

@reesew07 keeping my fingers crossed for you! I have found that walking in with a list is very helpful. It keeps me on track, I make sure my concerns are brought up in order of priority, and if I'm interrupted, I can pick up where I left off!