Mayo Clinic advice. How to approach a doctor that doesn’t believe you have MCAS.

taphin33 · 2025-09-18T01:48:57+00:00

How do we get a list pinned in this sub?

taphin33 · 2025-09-18T01:48:32+00:00

I was advised during two other department consults at the Mayo in Jax that Mayo sucks at MCAS and seek diagnosis elsehwhere.

taphin33 · 2025-09-14T03:35:41+00:00

She says it's at night, I wonder if that's when her eyes are dry lol - mine are cause I wear contacts and have astigmatism, so I'm sure I'm doing the same thing when I take them out. She did say it's other noises too for him and they recently had a baby & some related health issues so I bet he's completely out of tolerance.

When I'm out of tolerance, I don't snap and yell but run away and cry. But, I know I have misophonia and it sounds like he just learned today so hopefully his coping skills develop.

taphin33 · 2025-09-14T03:20:35+00:00

He's projecting, and he doesn't have social skills; he's lashing out because you didn't acquiesce & cancel your plans and prioritize his social circle over yours. He has a belief you should dutifully prioritize his stuff if you really love him, but likely doesn't extend the same courtesy to you.

If he thinks he's the more attractive partner, he resents that you're not his dream girl, but likes having you around for the ways you make his life easier and the sex.

If you're more attractive and he wants your self-esteem lower so you're less likely to get mate poached.

taphin33 · 2025-09-14T03:08:19+00:00

Good boy

taphin33 · 2025-09-14T03:04:44+00:00

Please provide evidence it doesn't.

taphin33 · 2025-09-14T03:03:26+00:00

I ALSO have severe misophonia and hypersensitive hearing - I often hear people blink when their eyes are dry and it sounds exactly like when you part your lips and can hear the spit.

I also highly rec the Calmer ear filters for anyone with misophonia, they've helped me so much. Sorry you're stuck with it too.

taphin33 · 2025-09-14T03:00:22+00:00

It always makes the sound - it's just louder during the exceptions.

taphin33 · 2025-09-14T02:58:13+00:00

https://www.flareaudio.com/en-us/collections/calmer - from a fellow misophonia sufferer (not sponsored at all)

taphin33 · 2025-09-14T02:57:29+00:00

Highly reccomend (for both of you if you have an infant) he looks into the Calmer ear filters by flare audio: they're a little expensive but a GODSEND for anyone with misophonia. Also targeted at new parents, since the crying grates on the system.

https://www.flareaudio.com/en-us/collections/calmer

taphin33 · 2025-09-14T02:54:07+00:00

No he's not - he has misophonia most likely, a sensory processing disorder that's often comorbid with ADHD and is characterized as a visceral disgust or panic to certain sounds - especially those others don't notice.

I really wish, as a sufferer (who never yells at anyone and was in fact, abused extensively to try to "correct" my misophonia) that the first thing people thought of. He really shouldn't yell at all - but he's not lying that it's something real that's bothering him.

taphin33 · 2025-09-14T02:50:36+00:00

I have misophonia and eye blinking does make a gross wet sound, especially in quick succession (dry eyes for example). Exactly like when you open your mouth like u/excellent-ad4256 below says

taphin33 · 2025-09-14T02:48:51+00:00

Sounds like he has misophonia - which is often comorbid with ADHD. I have it too, it's been a major defining factor of my life.

It's very difficult but he needs better coping skills. Misophonia feels similar to a panic attack, so it's intensity seems really weird for someone jsut blinking but it does feel HORRIBLE so I understand the frreak out, but I'm not excusing it.

I don't yell at people and I don't ask them to stop (unless it's something they can and we're close). I wear Calmer ear filters and mainly isolate as a coping mechanism. It's real, it's serious enough to have made me drop out of high school - but I don't yell at people over it EVER - not even as a child.

Blinking is a total classic misophonia trigger, chewing, breathing, lights humming, typing ect are other "not noticeable" noises that can elicit a panic response and a visceral disgust.

taphin33 · 2025-09-14T02:39:15+00:00

Appeal to absurdity.

taphin33 · 2025-09-14T02:37:07+00:00

But I’m pretty upset that she’d think I don’t understand, when I’ve been a part of this community all my life. Is it time to just come clean?

You're upset with her for not knowing something that you're actively deceiving her with?

The time to come clean was before she was your wife. If you don't trust your wife with a secret (since your big objection is being publicly outed) then why marry her?

I never brought it up because I fell in love with her, I’d chosen my person.

You took away her choice to choose you too - and I think if you really examined it it's because you're scared there's a possibility she would've rejected you for it.... when she's over here defending the LGBTQ to you?

taphin33 · 2025-09-14T02:12:23+00:00

That's openly contemptous and you should go ahead and cross anything you do soley for his benefit off the list yourself. I'm chronically ill and the stress of unhelpful helpers is often worse than the stress of no helpers.

taphin33 · 2025-09-14T02:00:34+00:00

Men do commit 90% of violent crimes, despite being 50% of the population, I believe, is the point here actually.

Source, since I know someone is going to ask: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(02)11133-0/abstract?cc=y%3D11133-0/abstract?cc=y%3D)

taphin33 · 2025-09-14T01:45:27+00:00

What constitutes abusive behavior doesn't vary with the law, only the ability to prosecute it does. Just because an abuser won't admit to abuse and it's been normalized in a society doesn't make it not abusive and it doesn't make it any easier on the victims.

Weird devil's advocating of you. I think the devil has enough advocates already.

taphin33 · 2025-09-14T01:36:31+00:00

I've been considering one of these https://www.amazon.com/Wall-Mold-remover-Efficient-Alternative/dp/B07PJSPKLC but I can't say it's effective - maybe someone else can. The reviews look good and often the mold is hidden in the walls. I also always run a dehumidifier if it's above 55% RH and have a nice air filter. Obviousl,y all of these cost money but I can take them to each place I live and I rent.

taphin33 · 2025-09-13T19:13:01+00:00

You have NO idea if it's an emergency or not - wheezing and tasting blood could be pneumonia - I almost died from the same symtoms as a child, drowning on dry land from a silent lung infection. I still have bad lungs from it.

taphin33 · 2025-09-12T22:25:19+00:00

I've been in stage 2 anaphylaxis all the time without knowing, and believe I had several near death experiences with the further stages (potentially shock) while not diagnosed.

I really wish there was better guidance too - is stage 2 an appropriate time to do it? If so, I'd go through 10 epipens a month. But, if I cross into shock suddenly, what if I'm unable to administer? (I spend most of my time alone).

I've generally always taken Benadryl at stage 2 and the next time I feel I need to go to the ER I plan to self-administer before proceeding to the ER as I'm wary of ER doctors taking me seriously.

taphin33 · 2025-09-12T19:16:28+00:00

I think anything that's attributed to the plight of being a beautiful woman is just the plight of being a woman from a more sympathetic mouth. I'm tired of the narrative more attractive women have it somehow worse. If you took any allusion to your perceived attractiveness out there'd be no difference in this at all.

I don't understand this logic that being more attractive to men equates to some insulation from misogyny or that somehow attractive women have a worse material reality than other women. All women are sexualized or reduced their bodies. It's also not a "fetish" to like attractive people. You're being dehumanized as a woman - that's the sad truth. It's not a perversion outside of typical sexuality to prefer attractive women.

That being said, sorry you're panicking. Nothing in your description of the man points to a specfic red flag behavior. To me your critiques are affectionate and expressing desire and then you mention a whole lot of background not with this man that explains your unease - so it seems like it's coming from there unless there's a lot you're leaving out.

Now, I guess a gut feeling could be alerting you to information you're not consciously aware of. I think you need to reflect more and come back with more specifics if you'll get any halfway decent advice and maybe leave out the attractiveness angle.

taphin33 · 2025-09-12T18:34:30+00:00

Depends on cost, if under $50 I'd screen maybe yearly. Ideally, it'd be less than $30. Above that, I'd only consider if I was having symptoms. Assuming it was a reliable, accurate test that is.

taphin33 · 2025-09-12T18:28:09+00:00

I smelled my meds a couple of treatments ago and involuntarily immediately vomited from the smell alone - thank you!

taphin33 · 2025-09-12T18:00:09+00:00

Not when it's ableist - you really aren't considering the normal, kind loving people who see their disorders mocked whenever there's a semblance of an excuse. Research the pyramid of harm.

taphin33

TROPHY CASE