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.
- 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.
- 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.
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.
Exactly. Thank you for sharing. At the very least, I hope this experience will bring the Minnesota mast cell community together.
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”.
If he accepted insurance we cld all follow him to NY but who can pay cash up front? Not me. 😞 I miss Dr. A EVERY SINGLE DAY!!!! I have NO ONE to help me now. Dr. Dorff has been out since like Aug/Sept last year and she is not scheduled back yet. I am in pain, dealing with my pump, and have no safety in knowing I have a doc every single day.
I’m so sorry. I had a huge lump in my throat after reading the last two sentences…it is very disheartening to live with a disease that you have to explain to almost every doctor that you go to.
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
He is practicing in Armonk, NY until the new institute is built.
http://mastcellresearch.com/2017/07/11/updated-message-dr-lawrence-afrin/
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.
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…
I also have anaphylaxis and Dr. A put me on a Benadryl pump. Have you ever heard of that?
Yes, my son had random anaphylaxis without hives too, and nobody could figure out why they responded to natural adreniline – ie get him really mad and then his o2 sats suddenly went up and he was no longer gray. Hmmmmmm if it looks like a duck…
My tryptase level, in a full blown attack that I was being intubated for, was normal. My 24hr histamine level is abt 5x’s the normal amt. I have inflammation markers, and several other blood levels to prove the MCAS but never the tryptase.
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?
There’s a doc at Mayo but you have to submit all your records and they’ll dcall code if he’ll treary you.
Mayo has decided not to treat MCAS patients currently
I have been accepted as a patient at Mayo. I have systematic Mast Cell.
Several of the docs on the list either cost just as much or are not taking patients. a few also have pretty long waitlists. That’s why we bit the bullet and did a Youcaring thing for fundraising.
I see Kathleen Hopkins at MN Personalized Medicine for my MCAS. She is great. Very hopeful .
Does she take insurance?
I am so sorry you too are going through this as sonmany of us MN MCAS patients are. Like you, I cant afford to see Dr. Afrin in NY and traveling far distances exacerbates my MCAS. I like my primary, but he wouldn’t call Afrin while here in MN. So, I doubt he will call him in NY. In general, I have found it very difficult to find any doctor who likes to call other doctors unless they are in the same healthcare system. Mileage has nothing to do with it. In fact, hospitalists don’t even like or aren’t willing to call doctors outside the hospital even if they are in the same network.
In the hopes this helps others not go through the whirlygig of phone calls and emails, I am listing whom I was told the following docs by the U that Dr. Afrin suggested to contact. Interesting thing is some of these docs were surprised they were having patients even referred to them due to Dr. Afrin leaving. So, my sense was they were not even contacted or asked if they were willing or even seeing new patients at all:
Dr. Ott: not seeing new patients.
Dr. Dorff: not seeing new patients.
Dr. Davis (IA): haven’t called yet but my insurance may not cover him out of state. I’ll update.
Dr. Tank: Was seeing new patients and took insurance but MCAS is NOT listed in his Dxs treated; had some kind of “seminar” but didn’t give date, time and place in a Friday email sent only to find out later on a Monday that the seminar was the Saturday before and was not advertised on his website; website changed info to just selling vitamins; website changed back to original website and still doesn’t reflect Dx of MCAS as a service AND now he doesn’t accept insurance for MCAS patients despite listing insurances accepted on his website. Not sure if any doctor who accepts insurance for one Dx can not accept it for another. I’ll be checking into that too.
One other doctor outside the U. suggested I call a Dr. Kelkar: He only sees MCAS as a consult and usually refers patients to Dr. Tano but has some business named Mast Cell Management, LLC.
In addition, despite meeting Afrin’s, TMS’ and Mayo’s criteria for MCAS, AND having both a referral to see Mayo from the U and an active medical record at Mayo, Mayo won’t see me for MCAS. I am waiting to hear back after several pleas. I’m trying to avoid having to deal with “Patient Experience” as it is better to try to work things out with the doctors before going to patient relations to sort things out.
Hope this info helps others as to not have to go in circles like I am to find care. It has taken a lot of leg work. I am continuing to work with various individuals to get the care I need. And I encourage you all to do the same. Gracefully advocate for yourself and/or loved one(s). Just be kind to yourself and others, and know your daily threshold of how much stress you can tolerate. I’m getting better to know mine and not let this eat at me or las out. It’s hard, but it helps to remember all this.
Peace!
Thanks for the info!
😮
Have others gone through this same experience? If so, how and from whom are they seeking help?
Yes. There is a Facebook support group for Minnesotans: https://www.facebook.com/groups/MNMastCellDiseaseCommunity/
I wrote a more recent post that touches on the Mayo Clinic issue: https://hellsbellsandmastcells.com/2017/10/26/more-mast-cell-grievances-from-minnesota/
Thanks for the inf!
I’m not on Facebook and really don’t want to be on it for personal reasons. I’m glad there is a forum though. If you could, are able and willing, please keep us updated on your blog, too.
I get this. The University did not even let patients on the wait list know Dr. Afrin was leaving. My son had been waitlisted since winter 2016, and they thought they had no responsibility to communicate We are desperately trying to get a diagnosis, and running into brick walls a lot. do you know of any competent in network people closer than NY?
I just found out today that my appointment was canceled after waiting 2 years to get in. I called to confirm my appointment and to find out who I was going to be seeing and I was informed that all appointments were canceled of patients who weren’t already seeing Dr. Affrin. I also have been looking for somewhere else to go but running into quite a few dead ends!
We ended up raining funds online and seeing Dr. Afrin in NY. We did get a diagnosis. Hopefully the local pcp will be able to work with us on getting a treatment regimen going.
This may have already suggested, but there is a physician database here: https://tmsforacure.org/physician-database/database/
Anyone know of anyone in the the corner of the US, Washington?
Edr1976–By now I hope you have found good health care. I live in Portland, Oregon, and receive excellent care through Kaiser Northwest. My team consists of allergist Julie Hong and oncologist/hematologist Jennifer Waugh. It was Dr. Hong who recognized mastocytosis symptoms and sent me off for testing. In Washington, if you are within Kaiser service area and are a member, you should be able to find help.
Reading this website and reader responses has made me feel fortunate to have Indolent Systemic Mastocytosis. With tryptase at 165ng and squirrelly mast cells, diagnosis is clear, unlike MCAS which is much harder to pin down.
Best wishes for better health to all Bells readers.
Has above found a good doctor in MN to treat their mast cell?
Dr. Dorff is the best MCAS specialist in MN.
Thank you!