My kidney still hurts. Removing the stones relieved the severe pain, but my mast cells are still spiteful from the surgery. I asked my urologist if I could try a mast cell stabilizer that targets the urinary tract. My hypothesis is it would decrease my kidney and ureter inflammation and consequently, I would collect less stones. My urologist said he hasn’t read any research supporting my claims.
Of course not. I taught him almost everything he knows about MCAS. Furthermore, I AM THE RESEARCH. Literally, I am a MCAS research participant. Am I supposed to jeopardize my body while I wait years for research to be published?
He asked me if anyone was managing my MCAS, which is the Minnesota way of telling me to seek help elsewhere. No, no one wants to manage my MCAS since my specialist left the state.
And then my urologist told me to piss off.
Okay, he actually told me to complete a 24-hour urine analysis. Another repeat test, another waste of time.
My desperation compounded when I learned Selena Gomez got a kidney transplant. If Selena, a multi-platinum singer, can’t save her kidney, I fear mine is also doomed.
Additionally, Selena’s friend gave her the kidney. I don’t even know how to ask my friends to bring me dinner. So doomed.
Find a new doctor, one might suggest. Unfortunately, the MCAS situation in Minnesota has gotten worse. As you may recall, the university stopped treating MCAS patients after my specialist left. The university recommended three doctors in other networks. Since then, all three doctors have closed their doors to mast cell patients. That sounds horrendous until you hear Mayo Clinic also refuses to see new MCAS patients. Apparently, Mayo Clinic is currently considering if they will see legitimate MCAS patients. Whatever that means.
Yesterday, I received a $500 hospital bill and a letter from the university, which will no longer treat me, requesting a donation to support its medical research. It’s a miracle I did not spontaneously combust.
This is infuriating. I’m so sorry you’re having such a rough time. I keep hearing conflicting info on the Mayo Clinic and was hoping it wasn’t true. I cannot for the life of me understand why Mast Cell Activation patients keep getting attacked but I’m sure it has to do with money somehow or perhaps malpractice fears. Either way, it’s ridiculous.
I saw my primary dr today who first decided….after i had been to urologists….gi’s……allergists…ents……orthos…..(many of these visits before i began even seeing her)….to check my tryptase which was elevated. I went to dr ott and she checked my 24 hr urine….my prostaglandin d2….or some such was close to 10,000 and supposed to be 5000 at highest. This thing affects mc regulation …hormones and injury healing all of which have affected me mentally and physically to a point i wish not to recall. At this time in my life i was already on disability for medical and mental health issues. Dr ott gives me allergy and anti inflammatory and beta blockers….none of which are helping. She refuses to even try a different allergy med that she actually mentioned in my records 3 times as her last option….ketotifen….and she recommended xolair shots but no one at her office will tell me why this dr dahlgrens office where they do xolair shots has not called me…i saw him and it was supposed to get going. this was mid august. 3 months into trmt not helping she said idk what else to do. My symptons continue to worsen and i feel hopeless. I have read some of dr afrins posts to see what he says about no drs treating ppl. He says ask your primary to send you to immunologist and suggest they try some of the drugs he used. She basically refused …only agreeing to call a dr and ask if he treats mast cell. We know what the
answer will be. They are just leaving us to our own devices. I am getting chronic and recurrent infections also and my gi so bad that it’s ridiculous top to bottom.
So sorry to hear this. It’s physically, emotionally, and financially exhausting!
Dang. But I am not surprised. However your post gave me some info to give to our “health insurers”. Dr Gregory Plotnikoff claims he knows how to diagnose and treat MCAS. But he does not play the insurance game, as Dr. Afrin no longer does either.
This is awful and so infuriating.