A sad day for Minnesota mast cells

Today, I lose my mast cell care team. My MCAS specialist is moving across the country. This is upsetting, but not unexpected. I knew I was extremely lucky to have easy access to (arguably) the world’s best MCAS doctor. I was grateful for every minute of care I received. He truly saved my life.

This is what I did not expect:
  • The university did not notify me, cancel my appointments, refill my prescriptions, or recommend new doctors until eight days ago – after I contacted them. They knew my doctor was leaving in May.
  • I found out on Facebook that my physician assistant, who has treated me for two years and has a valuable understanding of MCAS, is no longer allowed to see me, because…
  • The university will no longer treat MCAS.
I also did not expect:
  • Fellow MCAS patients to call Minnesota MCAS patients “whiners” for sharing their concerns about losing their care.
  • Fellow MCAS patients to accuse me of “doctor bashing” for expressing my outrage at the university’s mismanagement.

Amidst this turmoil, my kidney pain continued to gnaw at my body. I called the university, almost in tears, asking where I was supposed to get help. They recommended two allergists. I asked if they were kidding. I told them I’ll likely end up in the ER. So they offered me a final appointment with my MCAS doctor the following day.

My doctor and I discussed my pain, my kidney stones, and the possibility of kidney disease. I was stunned. On one hand, MCAS may be destroying my organs, and on the other, the university doesn’t believe my disease is serious enough to provide continuity of care. My doctor recommended I follow up with a urologist about surgery.

And then we said goodbye. I tried to maintain my professional composure while expressing my utter gratitude. I told him I am excited for him to advance MCAS education and research. His final notes in my chart read, “I thanked her for the privilege of having been involved in her care, and she thanked me for the care I’ve provided.”

For now, I am putting the turmoil aside. My kidney demands my full attention. I’m preparing for a painful surgery, gathering documents and praying the doctors will adhere to the mast cell protocol.

“What’s the disease called?” my new urologist asked.

“Mast cell activation syndrome,” I said slowly, as he wrote it down.

11 thoughts on “A sad day for Minnesota mast cells

  1. I understand. I landed back in Minnesota not long after he got here and finally got my diagnosis after having severe mystery neurological symptoms since 2010 on top of the usual hives/GI stuff (from birth). My meninges around my brain are turning into scar tissue and I’m growing scar tissue like a tumor in my cerebellum, and I’m allergic to shunts. I actually can’t find any neurologists or neurosurgeons in Minnesota willing to work with me. I at least had Dr. A. We’re not whiners. It just sucks. I’m not holding out any great hope for the two doctors that were suggested for some very specific reasons that I won’t go into. I wish you luck with your new doctor(s) and the next portion of your healthcare.

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  2. Thank you for your perspective. Dr. A has had to uproot his family twice now to continue his work and I know his actions have created difficulty for many people, but I believe he felt he had no choice. I find it reprehensible that other doctors and univerisities, especially ones that are publically funded) are willing to just write off patients if they don’t fit in their “box of care”.

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  3. I agree with why he left. I had an appointment for 1 year and theee months for August 9 th waited patiently and was cancelled. I was told to go to his site for info but didn’t see it at last checking. Anyone know anything about that? Or where he relocated too? Thank You Donna

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  4. Amen, sister!

    That’s ridiculous for Dr A’s patients who now have to start over with new doctors to be called whiners. Um, no. Switching doctors for people without our extremely complicated disease is hard enough! Add in the fact that it’s extremely difficult to find any doctors who know what MCAS is or is willing to learn about it and we have a real and scary problem.

    I guess that’s where we lean on each other and try to be respectful to one another.

    It’s scary to navigate the waters for MCAS patients and it’s baffling that we’re too complicated to help.

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  5. I’m from Minnesota-just a few hours from the Twin Cities. I’ve been trying to convince my allergy and asthma specialist that he needs to test me for MCAS for a while, but he ran the almighty tryptase test and proclaimed me MCAS free. He also denies that the random anaphylaxis events I’ve had since I was a teenager are in fact anaphylaxis because I don’t break out in hives. Sooo, I was just getting ready to schedule an appointment with Dr. Afrin when I heard the news that he was moving. Guess I’ll just keep going into anaphylaxis with a doctor who doesn’t believe me…

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    • I’m so sorry! There are other PCPs and allergists in the area who do order proper testing (24 hour urine analysis). However, finding treatment beyond antihistamines is a little more tricky. Don’t give up! I’m so glad you’re aware tryptase levels are usually normal with MCAS.

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  6. I was also a patient of his and just as shocked how I got treated at the U. I have been to other Drs at the U, Mayo, my regular Dr and allergist. No one wants to treat me. I can’t afford continued care under Dr. A in New York, especially since they don’t accept insurance. This disease sucks and is very complicated. Does anyone have recommendations for a doctor that is in Mn or a near by state that treats MCAS?

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    • There are a few doctors willing to treat MCAS. Dr. Afrin’s office has a list of suggestions (that I can’t seem to find right now, sorry). If you have a willing primary care doctor, they can work directly with him. I believe Ben Davis at the University of Iowa is focusing on mast cell disease. Best of luck to you.

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