The frustrating conversation I have with every doctor

My right kidney is flaring again. Through my research, all symptoms point to interstitial nephritis. I am in so much pain I can’t keep food down. My right kidney shows damage, but my kidney function is okay. Yesterday, I went to a new nephrologist, hoping for a protocol to manage kidney reactions and prevent more damage, but she is afraid of prescribing the recommended treatment, the treatment that I know works for me, steroids. She said steroids have side effects, and I laughed, because I know this firsthand. I tried to explain steroids are a necessity for many mast cell patients, and I tried to explain the connection between mast cell activation and acute interstitial nephritis.

Instead of trying to understand how mast cell affect kidneys, she launched into the same conversation I’ve had so many times with so many doctors.

Doctor: Who is managing your mast cell disease?

Me: No one.

Doctor: What about rheumatology? Immunology? Hematology?

Me: No one will treat me anymore at this university, since my specialist moved to New York. My immunologist refused to see me after I was diagnosed with mast cell activation syndrome.

Doctor: Well, what about Mayo Clinic?

Me: They don’t treat MCAS, because there is no agreed upon diagnostic criteria.

Doctor: Well, there has to be other doctors?

Me: The few specialists in Minnesota that are willing to treat MCAS patients beyond the first lines of treatment are in private practices and I can’t afford them because they don’t accept insurance.

Doctor: Well, can you talk to HR and your insurance to try to get coverage?

Me: No, you don’t understand. Those doctors don’t accept any insurance. They cost about $500/hour and I can’t afford that.

Doctor: Well, maybe there is a clinical trial you can enroll in?

Me: There are none.

Doctor. Let me look… there are a bunch for mastocytosis.

Me: I don’t have mastocytosis. That is a different mast cell disease. I have mast cell activation syndrome.

Doctor: Oh. Well, I’m sorry I can’t help you more. You really need someone to manage your mast cell disease.

There goes another $35 copay. Today, I am at home trying to manage my pain and reactions myself with medications prescribed by my PCP. It’s hard to have hope when doctors won’t or can’t take the time to learn. I don’t know if I will ever have access to adequate care, but I refuse to lose an organ, because doctors are not educated on my disease.

31 thoughts on “The frustrating conversation I have with every doctor

  1. Bravo underscoring no clinical trials apparently. Including at/funded by NIH. So far as I know, by no one who co-authored recent “Proposed Algorithm”. I regard it deceitful, however, if Mayo’s professed excuse is there are no agreed upon criteria. Mayo assesses, treats many patients who arrive w/ no agreed upon diagnosis, plus many other afflictions where there are diagnostic debates, differences.

  2. Maybe you will need to travel to see an MCAS doctor. I moved from Utah to Arizona to get the treatment that I need. Maybe you will need to relocate as well. It’s worth it. I go to Dr. Ronald Jorgensen at the Arizona Asthma & Allergy Institute. He sees MCAS patients. I couldn’t get the treatment I needed in Utah for my MCAS & I was miserable. I’m so glad I made the move!

      1. You make sacrifices to get what you need. If you need to move you will find a way otherwise you’re stuck in the same situation. I had to go drive for Lyft to make the money to move even though i was miseeably sick! Like I said you will find a way.

  3. Jen if you can’t go out of state or eat, those are not good choices. Have you tried going up to Duluth to Dr Kandeel? He does take insurances, at least some of them.

    1. Unfortunately, I need a more knowledgeable mast cell specialist to address my kidney issues. Dr. Kandeel is still learning how to test for MCAS. I was treated by Afrin for two years, so I’ve tried the first and second lines of treatment.

  4. I feel ya! I also have no one in MN managing my Mcas, and since dr dorff is private I’ve been doing more homeopathy. Feels like the only option, though expensive. But the allergist who was managing things didn’t really know about mcas either *insert shrug*

  5. Oh my goodness… these options (or lack thereof) are ridiculous! I mean talk about being stuck between a rock and a hard place. I’m so sorry.

  6. I’m so sorry you’re getting the run around on this. If these doctors only understood how hard we work to educate ourselves about our conditions, they wouldn’t be so quick to dismiss our suggestions. Why is it our fault that there are no available specialists in our area. I wish you luck in in pursuit of other options.

  7. What about getting treatment virtually? Is the doctor who moved to New York willing to see you on Skype? It’s not unheard of for people in remote areas and this case is no different. A great doctor who is still learning and rapidly becoming a specialist is my immunologist in LA at USC. DR. Xi. She’s the one who diagnosed me properly with MCAS and even saw symptoms of POTS and sent me to the cardiologist who specializes in POTS. I would try finding a great specialist willing to treat you remotely. What you’re doing is not sustainable and in the end you’re not a doctor so careful not to underestimate being under the knowledge and care of a doctor who can also identify other diseases that need treatment. As you know it’s not uncommon for MCAS patients to have other deficiencies that cause the same side effects. Mine turned out to be a Carnitine deficiency found by the endocrinologist referred by my MCAS doctor. You need doctors to point you in the right direction. Ask for virtual help and plan and prepare and save to move where there is care available for you. Good luck.

    1. Telemedicine is not free. Dr. Afrin does telemedicine after the first visit in New York. I am under the care of my PCP; prednisone is a prescription. Moving would mean losing my job, my home, and my support system. That is not sustainable.

  8. I totally get this. I live in Minnesota too and I’m working with my PCP and trying to figure out if I have MCAS, but we’re both doing tons of research and not coming up with much. No one will take me on as a patient, knowing I might have MCAS, because they either don’t believe in it or can’t diagnose/ treat it. I’m so glad you’re raising awareness with this blog and on social media because awareness is what’s needed for people like us to find treatment. Thank you for all you do!

  9. I understand all to well, I am in exactly your same position. The allergist refused to see me because she believes I have MCAS, the hematologist referred me to Stanford hematology to get a MCAS diagnosis but Stanford doc refuses to see me because he only treats mastocytosis. My PCP refuses to treat me for suspected MCAS because he does not believe I have it despite Claritin, Benadryl and gastrocrom alleviating my symptoms and an EDS diagnosis. My liver is taking a hit from the untreated MCAS and nobody wants to do anything about it because they don’t understand it. I could go to a private doctor who treats MCAS in my area but they don’t take insurance and cost $1500.00 and up per visit. Ughhhh.

  10. Again, I’m dubious of claims like your PCP’s professing they don’t “believe” you have MCAS. I doubt most such are even sincere. More likely, I fear, blatant lies. Also, drs. have plenty of patients with afflictions they don’t understand, know how to treat. With afflictions where diagnostic criteria continue to be debated. Notions that these render MCAS so exotic I regard bogus.

  11. Go see a Functional Doctor for MCAS as they can actually reverse a lot of issues you and your doctor didn’t even know you had! It is expensive and insurance doesn’t cover it and the traditional doctors cry “chalatan” but the reality is if we had Functional medicine in the first place, we might not have MCAS or leaky brain, leaky gut and the body attacking the zonula! If we could avoid corn, corn derivatives (both shown to cause leaky gut, along side gluten), GMO foods, heavy metal in vaccines – we’d be much healthier!

    I say this because Dr. Minkoff has actually reversed the disease in a man diagnosed with ALS! The uncureable disease! However, Dr. Minkoff thinks the guy actually had MS and was misdiagnosed. Dr. Minkoff also reversed severe Lyme disease (another non-curable disease!) Dr. Thomas works with MCAS patients. ihcog dot com. He is out of Georgia. He is an integrated doctor. He won’t take on a patient if he thinks he can’t reverse whats going on. I’m not in Georgia or Florida so neither can help me.

    Me: I know I have leaky brain and leaky gut, probably mold issues in house, heavy metal poisoning (still have some metal in mouth) and I react to lots of food intolerantly so severely that I call it an allergy. I also have true allergies. I avoid these foods like the plague. I also have histamine intolerance and possibly Lyme from being bite. We now know that anything that bites can potentially give you Lyme disease, and not just ticks. I can’t afford a functional doctor. 😛 I know I need one.

  12. Curious if in the interim since this post, have you found anyone here in MN who can help with kidney issues. I am in this boat now

  13. I need help. I just realized Covid probably caused my mysterious post symptoms and now I have MCAS.

    Are there doctors in Chicago that you have heard of ?

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