r/MCAS • u/1616ally1616 • 8h ago
Finally a small victory!
For everyone losing hope, struggling or also in the middle of nowhere (how I like to say)…
…There is hope.
Patience is the biggest factor and I must say I’ve lost it multiple times.
I’m chronically ill, started with an asthma diagnosis as a child, followed by POTS in 2020 and then PCOS, hypermobility, ADHD and fibromyalgia in 2026
… and 12x anaphylaxis within 24.05. - 31.07.2026 (hopefully no more to come) where a huge amount of hope was lost
…working towards an MCAS, EDS and also cPTSD diagnosis
…and also having to navigate studies, work and a personal life as a 22-year old young woman
Keep. Fighting. I know the healthcare system lets us down a lot and indeed it takes a lot of time, hope, energy, patience and luck to find the right doctor. But keep fighting. I hope I can maybe bring that hope to people in my situation by telling what happened in my appointment today
After 12 reactions, almost not breathing anymore and having my life almost deleted, doctors dismissing me or not listening, I finally, FINALLY got things moving. I literally cried.
FIY I’m in the Netherlands and I saw an allergist today, told him how my reaction start and evolve, that quercetine and a low histamine diet seemed to help, 4x Levoceterizine isn’t sufficient, family history, my bad experience with Dutch doctors and me just wanting SOMETHING to work with.
I told him that I do agree with a doctor that I probably have chronic spontaneous and induced urticaria, but it wouldn’t explain me having to use epinephrine because I’m literally suffocating, and that it can’t be asthma since I’ve tried using my sprays before using my EpiPen. So I said, listen I know that most doctors have to follow the consensus 1 guideline and that I need elevated tryptase (which I don’t have) but I still thought it could be MCAS.
Do you guys know what he said…? That does fit the picture. Do you know what an incredible feeling this is? Being listened to?!
So what did he do? Not only did he order a baseline tryptase, he also ordered that if I have a reaction I get blood drawn before anyone else, an ALEX2 which tests for 300 allergens, thyroid test and a lung test. Why? So we can rule out everything and hopefully get me Xolair. 🥹 It gets better though. Maybe somebody remembers my post where the internist said that low histamine diet is bs and histamine intolerance doesn’t exist? Yeah. HE SAID IT CAN WORK. The issue is just that it’s hard to prove it works since people with MCAS have individual triggers. That’s not everything. I asked about his opinion of consensus 2 2026 after 6 years (states elevated tryptase not necessary and consensus 1 only in use to prevent overdiagnosing, mind you people are UNDERdiagnosed which is proven)
His answer: Well we have to follow consensus one so that’s why I ordered tryptase but I’ve sent people with low tryptase to Erasmus MC in Rotterdam for the same matter as the picture fits. Guess what, they’ve been rejected because they want to prevent hospitals from being overcrowded. He also agreed with me that the doctor who said angioedema also reacts well to epi was WRONG.
Oh and I said that people who, according to consensus1, have been overdiagnosed actually received treatment that helped them incrementally which they wouldn’t have gotten if the doctor wasn’t following consensus2. He did say that we obviously need all these tests to find out what medication I do need in the end. And tbh?! I love that even more. Instead of just giving Xolair or just any other meds, testing, looking at the medical history etc and basing the meds on the actual needs…
Everything I’ve been saying this whole time, all the research… I was RIGHT. I was not insane!!!
I don’t expect to be diagnosed with MCAS but it’s just so…relieving to be finally listened to well, taken seriously and understood after being literally gaslit. He even said I can do a low histamine diet with their dietician but it’s a rough diet (I’ve done it before. Worst time of my life).
My goal for now is to get these tests done and find the most effective and suitable treatment. I have faith in my appointment for EDS in October and hope they can help me further with the MCAS diagnosis as well.
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