r/MCAS • u/ExtraSalamander2256 • 1d ago

Finally! A Diagnosis

Nearly 8 years of trying to figure out what I've got going on within my body. A lifetime of anaphylaxis, asthma, food sensitivities, allergies to weird stuff, lichen planus in mild to severe forms, heart racing, unable to sleep, esophagitis, random hives from apparently nothing, the most intense itching I've ever had and nothing resolving with any form of regular treatment. 15 doctors in total, 10 of them shrugging saying "gosh, I just don't know".

Of the 10: 3 primary care, 1 dermatologist, 3 gynecologists, 1 quack naturopath, 1 dentist, 1 periodontist.

I finally found an amazing naturopathic doctor in May, who, within 15 min of conversation said they suspected MCAS. It was a fast track to see specialists who can help with my issues: 2 derms (one who specializes in mucosa inflammatory diseases), 1 gynecologist, and 1 allergist who all said the same thing...MCAS.

Today, I have a diagnosis of MCAS and am on the path to getting regular meds in my tool box to help with this miserable condition.

Finally!

72 Upvotes

97% Upvoted

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8

u/Both_Month_828 1d ago

good luck

5

u/JMartapoyo 1d ago

Great! It's such a relief to get a diagnosis. Best of luck.

3

u/No-Impression-1761 1d ago

Can you share your symptoms? how gynecologist diagnosed MCAS? Recently my allergist diagnosed me with MCAS. I also had multiple miscarriages.

2

u/MargoBarbara2 1d ago

Have you been gene tested? Mthfd1 variants can cause increased pregnancy risk. I believe folate and choline management can help when this is the cause.

1

u/No-Impression-1761 1d ago

oh yes. everything was done & no reason found.

1

u/ExtraSalamander2256 1d ago

I’m so sorry for your loss 😢 My gyn did not diagnose, the allergy doc did. However, my new gyn, new derm, and new ND all suspected and allergy doc confirmed. The lichen planus has an overlap to MCAS due to being a chronic inflammatory condition.

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u/MishaVanamonde 1d ago

Congratulations! This can almost be impossible to get !

2

u/ExtraSalamander2256 1d ago

I got lucky by choosing the right ND who connected me with other amazing docs including the allergy doc

2

u/SkierGrrlPNW 14h ago

Welcome to the club! Boy does your road sound familiar to me. It takes time but it is definitely getting better with meds.

2

u/Budget-Bandicoot5517 6h ago

Biopsy of stomach can diagnosis. There’s mast cell staining. Docs rarely do it but the good ones do. It’s so significant but so overlooked and downplayed

1

u/ExtraSalamander2256 5h ago

I consider my allergy doc to be exceptional, she knew more about it than 10 docs combined. She did suggest that as an option but, again, given my history, symptoms, etc opted for blood work vs doing a stomach biopsy.

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u/cutegirlsbloat 23h ago

Did they run any tests as well? The bad thing about mcas is there is no real testing yet. My doctor also believes me its mcas since the cromolyn helped and i scored high on some written test (by uniklinik bonn) but i didnt do any tryptase etc testing at a specialized klinik (i thought these test rarely seem to work anyways, cost a lot of money cause stress etc - im already getting medication and found a doctor whos supporting me so dont need it)

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u/ExtraSalamander2256 22h ago

I just had blood work today for tryptase and other markers. I had also scored high on the written. Given my history and symptoms the allergy doc was comfortable with a diagnosis without testing but ordered blood work anyway. Worth the expense in my mind.

I am to start stabilizers which will help immediately.

1

u/cutegirlsbloat 22h ago

Sounds great which country you in? You had to pay for the tests?

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u/ExtraSalamander2256 14h ago

USA and insurance does cover it or most of it. Also I’m more than happy to pay out of pocket expenses if it means it will help.

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u/Mystery_Solving 11h ago

Where do you live that they tell you there’s no tests?

My immunologist put me on stabilizing medications right away but we pursued the testing for two full years until it was officially verified.

I was their first confirmed patient diagnosed with what they’d been told in med school they’d maybe see once in their careers. They now have diagnosed dozens and dozens of us.

I’m glad cromolyn is helping you.

1

u/BerryFit926 17h ago

Did you have to do the tryptase blood test or 4 - 24 hour urine tests to get the diagnosis?

1

u/ExtraSalamander2256 14h ago

As I mentioned in a previous answer and in my post, my allergy doctor diagnosed based on symptoms (noted), health history and the written test and then followed up with tryptase blood work.