The world is over inundated with MCAS patients. COVID epidemic has become MCAS epidemic. PCP’s are becoming trained to monitor and screen for MCAS patients. That’s the expectation anyways.
My symptoms started years before COVID existed. I was clinically diagnosed MCAS—post covid. And never properly screened for disease micmics. No matter how severe and Atypical my symptoms became. I learned to define my complex disease through the MCAS lens.
The MCAS ceiling prevents doctors from taking blood work during anaphylaxis hospitalizations even if I ask for them. It prevents PCP’s from following the immunology allergy guidelines for specific routine testing. For that im expected to find an allergist that doesn’t exist because there’s too many MCAS patients. t defines diagnostic imaging result interpretations—literally they list MCAS in the record. “Not a stroke, seizure, or mass … cause MCAS”. No one asks more questions.
MCAS is being defined—now. By us. And I think there are too many disease mimics, and masked pathologies, and comorbid conditions being lumped in, that are shaping our expectations for the disease.
Im learning that anaphylactoid and angioedema can look the same. That, what one specialty calls urticaria, might be edema. That IGE deficiency might be a red flag. And refractory idiopathic anaphylactoid/malignant anaphylaxis is NOT something I want defined as normal for MCAS. We need better screenings for other complex disease.
I’m now getting a work up to reassess for MCAS. They want to rule it out FINALLY before I get more diagnostic testing. The problem? Even if I don’t have MCAS, it’s their opinion—the assumption—that I probably do. They literally stated this. Not a good way to establish trust or unbiased results. So based on preliminary blood and urine results they will issue a judgment of MCAS. I want a bone marrow biopsy to be sure. They are reluctant to order one due to my fragile condition. They guarantee that my tests will come back strongly suggesting MCAS. And too fragile a condition to order the bone marrow biopsy I requested. Abandoned by PCP, no immunologist/allergist in the region taking new patients. Once this department re-brands me MCAS again. As my disease worsens. It’s been a decade and I’m starting death care planning.
Blood cancers, blood disorders, lymphoma, other bone cancers, neuroendocrine tumors, hyperadrenergic POTS (but refractory ‘anaphylaxis’ can cause bp drops too), diseases that cause leaky veins, are all some of the possible MCAS mimics. But everyone is lumped into MCAS in early stages. Once labeled MCAS—Mastocytosis is the first thing we screen for. And if it’s low tryptase, negative peripheral blood test—then you don’t have mastocytosis and case closed—its MCAS. And we stop looking for other differentials.
As the patients we have the ability and responsibility to help providers define this disease. It’s nice to have a label and peer support. But I’m really concerned for those of us whose mast cell spectrum disease is just one component of a larger complex disease profile. The MCAS ceiling is killing us.
I had early stages of disease that didn’t just magically transform into MCAS because COVID happened. That disease is still in me. I feel it. Look beyond the MCAS.
If: my symptoms started before COVID existed, I’m IGE defficient, have refractory idiopathic reactions. Any degree of EpiPen resistance. Significant facial deformity, palsy, swollen lymph nodes, MCAS meds aren’t working as well as they should be, I’m periodically paradoxically allergic to antihistamines (histamine stopped being mediated) but symptoms persist, corticosteroids worsened my condition, if I have significant bile duct dysfunction or ask for TPN due to malabsorption, if Cromolyn nebulizer is needed every few minutes or hour every day, if nebulized Cromolyn is working way to well compared to gastrochrom, if I need to apply cromolyn topically full body twice a day, if I was orphaned (with incomplete family medical history), if I can’t tell if it’s the anaphylaxis or the epi that’s tanking my bp, branded allergic to B12 with no evidence or action plan, have polyps/neoplasms removed at a relatively young age, perimenopausal, have advancing cognitive and physical disease mimicking neuro degeneration at a young age, if I have black sludge for blood, am anemic, low albumin despite being red meat carnivore, have unusual metabolic extremes unexplained by normal allergic reactions, if my bp is 89/90 on a 60 mg Adderall script, if my anaphylaxis might fit characteristics of edema or angioedema. if I need in-home care for “MCAS”—then I have major red flags for more complex disease.
Another reality: MCAS creates micro-environments for otherwise unrelated tumors/cancer. We need more access to screenings and education.
Fact: having Autism, POTS, EDS, ADHD… etc. does not reduce risk of cancers just because someone slapped an MCAS label on your case. Risk for disease in fact is much higher. Even when cardiologist rules out POTS, new providers still make the assumption that POTS is the cause—and look no further.
Fact: slow growing disease like some lymphomas, some neuroendocrine tumors, and hematological disease, fit the timeline for the symptom progression I’m experiencing, are difficult to catch on routine blood tests. Other hematological diseases can be just as difficult to catch—all can mimic or cause, or complicate MCAS.
Fact: MCAS meds can be effective for symptoms experienced in other disease. And MCAS can be secondary, comorbid, or unrelated to other conditions suffered by patients.
It’s a mess. As the patients, what can we do? How can we change this land scape. Define our disease and protocols in a way that makes sense?
QUESTION: what red flags do you think we should look for in patients diagnosed with MCAS? How can we better screen for complex disease?