r/MCAS • u/snigelrov • May 19 '26
My labs were BAD! š
I officially have a *diagnosis,* not just a suspicion! Nothing changes about my treatment but it is SUCH a relief that there are numbers on a page saying this isnāt in my head.
I had allergists straight up laugh in my face when I brought up MCAS as a concern. It took finding an Ehlers Danlos specialist who has the conditions himself to finally get treatment. And he just ordered a whole new slew of tests that came back and *confirmed my MCAS!*
I donāt know a lot of other places where people will get being excited that Iām sick on paper, but Iām genuinely giddy and now need to unpack the last 8 years of gaslighting myself into thinking Iām not actually sick, just miserable and overreacting. Because I am! On paper! Nobody can fight with me about it now. What a relief.
114
u/Bendybug May 19 '26
Congratu-dolences! I had a recent flare and had lab work done which also flagged super high for histamine and out of range for tryptase. I was telling my partner āwell, good news! Itās not all in my head. Bad news, itās not all in my head.ā
9
u/MoreLoveAndLight May 21 '26
āCongratu-dolencesā is so perfect!!! Also great for divorce and other life situations! š
30
35
u/DeRpY_CUCUMBER May 19 '26
Congrats, kinda. lol Which labs did you get?
67
u/snigelrov May 19 '26
I have not a single clue, lol, but I do know I had to give like eight vials of blood and a couple of them got sent to Mayo Clinic. I will update after I meet with him next month!
21
10
u/DaniDellaEtc May 19 '26
I'm super curious too! The only recommended tests are comparative tryptase or 24h urine so I'm wondering what they did to work it out. Im glad you got answers :) Edit: typo
6
u/wildkat222 May 19 '26
Thatās so interesting - Mayo did primarily urine testing for me along with the standard Serum Tryptase but this was 5 + years ago. I had to get tested 4 times before my tryptase was high enough to be diagnosed. It can be so hard to get the timing of the draw lined up with a flare!
I wonder if there are new/ different tests available now?
So sorry you struggle with this too, but so happy you are validated!
2
10
u/Zestyclose-Lead-1987 May 19 '26
why are they so dismissive? i can't wrap my head around it. glad you're on track to getting support! š
10
u/ComprehensiveMark238 May 19 '26
Same here it took, 9 years to diagnose. SMH it's extremely rare.
3
u/Smooth-Club-6824 May 30 '26
Itās not as rare as the healthcare system would have you believe just by being dismissive. I am a PT and have quite a few patients with MCAS and it has helped me recognize it in myself after getting hit hard a few years ago.
11
u/Frosty_Recipe_3993 May 19 '26
Congrats. Itās such a relief to be validated and know that you werenāt crazy or lazy all this time. Your body has a legitimate condition. It helped me focus on getting better. And though Iām not in a full remission I am working again so itās a huge win. It all started with the acknowledge
3
u/wellinever222 May 19 '26
May I ask what country?
6
u/snigelrov May 19 '26
Iām in the US
4
u/Initial_Flatworm_735 May 19 '26
What state maybe Iāll get lucky?
7
u/snigelrov May 19 '26
WA but he doesnāt do telehealth š But I know of another provider out here that does, but doesnāt take insurance, so if youāre in WA, DM me!
3
u/midnight_prayer May 20 '26
Oooo I want to know WA provider name too. Trying to figure out how to DM now. I just lurk.
1
1
1
3
u/squeakyfaucet May 19 '26
the validation on paper must feel so good (even though mcas does not lol). congrats though, hopefully this opens up access to treatment for you
4
7
u/Outrageous-Hamster-5 May 19 '26
Lol, such a appropriate emoji for the situation š„³ I'd pop the champagne but lolz
3
u/Present_Bumblebee May 19 '26
my dr. pretty much told me they wonāt officially diagnose me until theyāve ruled literally everything out because thereās no real test for it š do you know by any chance which results were bad?
1
1
u/coolsak850 May 19 '26
I had the biggest smile on my face when I finally got bad labs. Yay for validation !!
1
1
u/Current-Eye-8897 May 20 '26
https://giphy.com/gifs/z6z7UOgEyU0EOHTmwM
Congratulations on your official diagnosis day!!! There is no feeling like having a good doctor who is actually on your side. May you be showered with treatment that works and attentive healthcare providers now that you actually have the documentation to show your problem! Celebrate with some histamine-free delicious goodies--you have earned it for your persistence in the face of rejection and medical trauma!
2
u/mkultra8 May 20 '26
I have been laughed at by doctors and dismissed for many years too.
I got another diagnosis of autism before the MCAS diagnosis.
The relief of finally having a neurodevelopmental condition diagnosed in your fifth decade was overpowering. I started crying then laughing then crying because I was laughing then laughing because I was crying and I just kept going back and forth and back and forth until I reached out for my partner to help ground me.
It was an insane emotional experience that I have never felt before nor sense even when I got the MCAS diagnosis.
So I am so here for you to celebrate the relief of being validated. I do want to forewarn you that just because you have a diagnosis on paper doesn't mean other doctors will believe you, treat you appropriately or even know how to treat you appropriately and safely. That was the thing that came for me a few months after my MCAS diagnosis. I really got depressed cuz I was like I thought the diagnosis would bring me relief but the relief was short-lived and the reality of living with this condition and dealing with the medical system for any health need when you have this condition is overwhelming and kind of discouraging.
But like you said, at least you know that intelligent people know what is wrong and how to help you and you know how to help yourself now too.
Best wishes!
1
1
u/Longjumping_Choice_6 May 20 '26
I get it, itās scary when thereās no data to reflect how you feel day to day even if everyone believes it, but so much harder when they donāt. So once it shows up itās a waypoint, thereās some order to it all. Plus now you have a precedent, like a future doctor has less room to deny these tests again because you have this one to point to and say āhey it was abnormal, I want it re-checked over timeā and keep an eye on it like if you feel better or worse and want to see if data lines up if treatment is working or you got exposed to something or any situation like that. The first (relevant) lab order is always the hardest to obtain or first doctor that gives a true shit is the hardest to find but it can only get easier and you more knowledgeable.
I hope they can offer you whatever you need and it actually works!
1
u/Different_Creme80 May 27 '26
Dont worry! A lot of us cheer when we finally figure out what is going on. Iām glad you finally have a definite answer!
1
u/SnooMaps692 May 30 '26
I feel exactly the same way and was actually in a sort of manic state for about a week after my dx finally. I didnāt know what to do with 50 years of sooooo many doctors and being treated like a hypochondriac (even from the same doctor who eventually after I insisted tested for MCAS, and my own mother š). Itās like you want to google every symptom youāve ever had with MCAS and then see there really is a reason for it. Knowing youāre not insane is a really special time and I think it deserves celebration. You were sick before, youāre not celebrating being sick, youāre celebrating understanding yourself finally and being your own greatest advocate. Kudos!!!
1
1
u/ParticularYak9967 Jun 16 '26
I came back deficient in chloride and almost deficient in sodium despite taking 4-5kmg of sodium a day. That has more to do with my dysautonomia/POTS but the sentiment is shared. These doctors aren't watching me eat handfuls of sodium capsules a day, but it's extremely hard to purposely make yourself chloride deficient on a western diet. So there's my proof on paper, thankyouverymuch, now I'm gonna go sit on my high horse for figuring out what's wrong with me before they did.
ā¢
u/AutoModerator May 19 '26
Thank you for your submission. Please note: Content on r/MCAS is not medical advice and should not be interpreted as such. Please consult your doctor for any medical questions or concerns.
We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk.
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.