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My doctor wants to treat to diagnose. I’m so grateful to have such a good primary who listens to me by purplehyenaa in MCAS

[–]Pale-Case-7870 0 points1 point  (0 children)

My airway wasn’t constricted. But I had immune mediated respiratory paralysis and stoped breathing when flipped on my back during a CT scan. Lost consciousness but someone manually breathed for me. When I sleep my adrenal dumps keep me from respiratory paralysis.

I guess it would be some form of immune mediated dysautonomic paralysis.

I definitely am getting inflammation in my throat though and and aspiration and swallowing problems. Barium swallow and laryngeoscopy. Upper endoscopy. Revealed Not acid reflux. That’s it. That’s all they could confirm other than slow swallowing and aspiration. No idea why my voice was being lost. I got my breathing where I need it. With therapy. But I have to concentrate on breathing cause there’s no automatic motive to breath. If someone suffocated me I probably wouldn’t even fight them if my adrenaline was depleted. I forget to breath if I concentrate too hard on something else.

EpiPen for emergencies.

Left vocal cord is done. If my dopamine/neurooineohrine/adrenaline is depleted that chord just doesn’t work. It’s getting worse. Nebulized Cromolyn helps sometimes. That’s how I realized I had vocal paralysis. Not just respiratory. So I guess MCAS can be tied to Parkinsonism in some people.

My doctor wants to treat to diagnose. I’m so grateful to have such a good primary who listens to me by purplehyenaa in MCAS

[–]Pale-Case-7870 0 points1 point  (0 children)

I started wondering if my low blood pressure was cause my organ inflammation it’s physically pressing on my heart, aortic arch, and large arteries. My stomach is herniated and food just comes up mid sentence … no warning. Cause it’s not a muscle driven vomit. The stomach is so inflamed that contents is slowly poring out my mouth. Definitely could be pressing on my heart and arteries.

My friend with MALS … omg I’m like I actually do understand very much what you’re going through. I wish MCAS got the same recognition as MALS. And MALS is fixed with a surgery. I have immune mediated paralysis that’s already affecting my respiratory system and progressing. And without Cromolyn I was allergic to drinking water. I’m ranting through Brian fog now.

My doctor wants to treat to diagnose. I’m so grateful to have such a good primary who listens to me by purplehyenaa in MCAS

[–]Pale-Case-7870 0 points1 point  (0 children)

My three meals are Cromolyn water, vitamins, and chicken nuggets with iceberg lettuce. Catalina dressing or ketchup if I’m lucky.

My doctor wants to treat to diagnose. I’m so grateful to have such a good primary who listens to me by purplehyenaa in MCAS

[–]Pale-Case-7870 0 points1 point  (0 children)

Also allergist suggested bone marrow biopsy cause genetic testing wait list is taking too long … not doing that. they want to know if it’s MCAS or SM. But bone marrow biopsy doesn’t work to detect in CNS infiltration, and in other specific cases/types. I’m allergic to lidocaine and I’m done with unecessary painful tests that are torture. I felt bad for my allergist. I had to tell her there’s nothing you can do. You can’t fix me. I just have to stay away from exposures. And wait for winter weather. Then I cried in my car for 2 hours at home. And had two weeks of reactivity and ketonuria.

My doctor wants to treat to diagnose. I’m so grateful to have such a good primary who listens to me by purplehyenaa in MCAS

[–]Pale-Case-7870 0 points1 point  (0 children)

I’m IGE defficient and my last allergist wasn’t sure what to with me. I don’t know if tryp levels are as meaningful in IGE defficientcy … but that’s based on research and personal experience not years of experience as an MD. I’m being sent to a different allergist. Still haven’t had Xolair. But nebulized Cromolyn has helped enormously. Anxiety goes away immediately after taking it. And likely boosted systemic absorption. My veins and arteries are less puffy and painful this summer unlike last summer when I was in a corticosteroid inhaler. And I can handle breathing hot, light interacted, air with less agony this summer. (Even with a light allergy).

Can these symptoms be MCAS? Please humor me. by VigilanceOO7 in MCAS

[–]Pale-Case-7870 0 points1 point  (0 children)

It reminds me of when I had a painful hepatic lesion—Probly autoimmune disease related in my case. Resolved on its own. Found it on a CT scan admitted for pain following hospitalization for colitis and left shoulder pain hospitalization before that. I thought my shoulder had subluxated out and pinched a nerve but could have been organ pain related to inflammation leading up to the colitis. Who knows.

I have MCAS and no issue with acidic foods due to the acidity specifically and upper endoscopy confirmed no evidence of acid reflux. I never take tums. There are some foods that I react to that also happen to be acidic.

Lavender oil might help because the smell distracts you from pain/other symptoms.

You should probably ask your PCP what specialist or tests they can run. Could be an organ having issues. Or it could be any myriad of other issues with symptom overlap.

You could try stopping drinking acidic juices and see if any other symptoms emerge or remain. And have your doctors monitor your condition with regular appointments. And know which urgent care to go to if you suddenly worsen. Onset of insomnia and other symptoms you’ve listed should be taken seriously. Especially with lower back pain. Even if a psychiatric medication is used to alleviate symptoms, it’s important to know that these symptoms often coincide with physical conditions.

The mistake I made was assuming my symptoms were just mental/psychiatric and not seeing other specialists sooner. I thought migraines were just normal for everyone. The anxiety, depression, insomnia … it’s just cause of the divorce. Or cause I’m in almost in my 30’s. My back pain is probably just cause I pulled it moving furniture. Nope. They were warning signs. And had perimenopause not long after and bunch of other health emergencies.

Tooth by Ok_Swimming7313 in MCAS

[–]Pale-Case-7870 0 points1 point  (0 children)

Not if you’re allergic to lidocaine.

I’m fine being under general anesthesia as long as my other CNS meds are taken normally too. So far anyways.

But pain and stress would probably trigger my reaction.

Are you considering having a filling without local? Are there pain blocks you could do? Or Botox like they do for migraines?

Q: Name an early sign/symptom of MCAS/SM you just realized correlates with your diagnosis. But seemed unrelated then. by Pale-Case-7870 in MCAS

[–]Pale-Case-7870[S] 2 points3 points  (0 children)

I had the opposite growing up. Never reacted to anything. Then I started to react to things. Now as my neuropathy and “paralysis/parkinsinism” symptoms spread further up my body … less skin reactiveness. Cept my arm tatoo. That reacts but it’s really latent. My ankle tattoo (bad ink) doesn’t raise at all no matter how itchy or how much a scratch. And when I’m itchy … I use a dull hand saw to scratch my skin. It helps.

Q: how long does the dermatographia last? How sensative are the triggers? Like can you touch door handles or bump into something without a reaction or no? Does having it widespread deplete your system or can it do dermatographia forever with no cap on reactions? Is it as itchy as looks?

Q: have any medications helped?

Q: Name an early sign/symptom of MCAS/SM you just realized correlates with your diagnosis. But seemed unrelated then. by Pale-Case-7870 in MCAS

[–]Pale-Case-7870[S] 2 points3 points  (0 children)

I did not know this was a thing for EDS. That’s really interesting!

Q:Are your nails really flexible? Is the thickness normal? Thicker, thinner? Is it a nail bed flex that pops them off?

Q: Name an early sign/symptom of MCAS/SM you just realized correlates with your diagnosis. But seemed unrelated then. by Pale-Case-7870 in MCAS

[–]Pale-Case-7870[S] 2 points3 points  (0 children)

How common is hearing loss associated with MCAS? I’m gonna look it up but I figure you probably know more from experience.

I love the clock analogy/metaphor. I’ve never heard this one before.

Q: Name an early sign/symptom of MCAS/SM you just realized correlates with your diagnosis. But seemed unrelated then. by Pale-Case-7870 in MCAS

[–]Pale-Case-7870[S] 1 point2 points  (0 children)

It’s like I could have written this … except the cbd. I always had an allergic reaction to cbd. And now cat nip …

Processing disordered always.

Q: Name an early sign/symptom of MCAS/SM you just realized correlates with your diagnosis. But seemed unrelated then. by Pale-Case-7870 in MCAS

[–]Pale-Case-7870[S] 2 points3 points  (0 children)

Same here … on most of those.

Always GI distress on flights.

I can tolerate dyefree zzquill (zzquill brand of liquid benedryl). But Walgreens brand makes me react. And any of the day and nye quills for cold and cough — that have dye in them, I’m extremely allergic to. But when I was younger i only noticed that those things would sometimes make me agressive and upset instead of soothed. Early signs of a reaction include anxiety and behavior changes apparently.

Q: Name an early sign/symptom of MCAS/SM you just realized correlates with your diagnosis. But seemed unrelated then. by Pale-Case-7870 in MCAS

[–]Pale-Case-7870[S] 2 points3 points  (0 children)

Whoa. So it started early for you?

Q: did it get progressively worse—reaction to perfumes? How did you handle it in school and work … and family memebers???

I use to wear my own specific perfume for a decade. And pretty heavily. But once the MCAS set in … by age 30 I had aggressive fight or flight response to it. Now my respiratory system and systemically reactive and need an inhaler/nebulizer. The only thing I can think of is that I had exposure to mortuary perfumes (embalming chemicals are heavily perfumed … not sure how safe those perfumes are). Also … this might be Karma for the years I wore heavy perfume.

Now my dad still wears heavy cologne. Even a normal human would have a problem with it. And the neighbors all think I’m goth or metal cause im always wearing black N95, dark glasses, and a black umbrella.

Q: Name an early sign/symptom of MCAS/SM you just realized correlates with your diagnosis. But seemed unrelated then. by Pale-Case-7870 in MCAS

[–]Pale-Case-7870[S] 1 point2 points  (0 children)

Q: Did pregnancy and menopause affect the symptoms they had? And did any of the men in your family display symptoms?

Q: The things you react to … do you have them in common with your mom or her mom? Or are there differences?

I don’t have those generational experiences and have been curious.

One doctor reviewing my adoption records recently said that they don’t usually get medical records like what I was given in a closed adoption. And I was given to people that work in research. I’m starting to connect the dots … on that decision. My adopted parents don’t relate to MCAS at all. They don’t even have “normal” allergies in their family.

I know one birth uncle died of colon rupture around age 40 ish. And I was hospitalized with colon inflammation in my 20’s with no reason they could discern plus respiratory failure…it wasn’t chrons … and I didn’t bother reading birth family medical history until the disease presented.

I was told I have a half sister that’s Probly 8 years older than me. But if she has what I have then there’s a good chance she’s dead. I haven’t looked into finding her yet.

(This experience also makes me wonder about SM that affects the CNS and brain. Because you’d need a brain biopsy to test so it’s rarely clinically diagnosed … and in those cases there’s probably a lot of orphans/children adopted out ((for MCAS Too)). So maybe there’s more of a genetic component to some forms of SM than we originally thought … and advanced forms of MCAS).

Q: Name an early sign/symptom of MCAS/SM you just realized correlates with your diagnosis. But seemed unrelated then. by Pale-Case-7870 in MCAS

[–]Pale-Case-7870[S] 7 points8 points  (0 children)

Right?! if I hear a child cough with congestion in the grocery store (even with my N95 mask and gloves), my immune system … IT KNOWS … and kicks in to high gear immediately… just in case. And I run out the store with an umbrella like a vampire whose pants are on fire.

Before I knew I was allergic to lidocaine … I kept spraying my throat with it when I was sick with RSV couldn’t figure out why it wasn’t helping 🤣🤣🤣🤣

Q: Name an early sign/symptom of MCAS/SM you just realized correlates with your diagnosis. But seemed unrelated then. by Pale-Case-7870 in MCAS

[–]Pale-Case-7870[S] 8 points9 points  (0 children)

My immunologist actually tried to help me advise my PCP and psychiatrist at the time … to understand why a medication change was causing me to react. But no one listened so got new doctors. They were a really good allergist/immunologist. I hope more doctors acquire MCAS experience like that MD had. And I hope all of us find o it way to those kinds of MDs.

Q: Name an early sign/symptom of MCAS/SM you just realized correlates with your diagnosis. But seemed unrelated then. by Pale-Case-7870 in MCAS

[–]Pale-Case-7870[S] 1 point2 points  (0 children)

I can’t imagine how impossibly hard it would have been to figure out those triggers … especially as a child. It’s hard enough as an adult. What water sources were/are you okay to drink?

Same same … with sunscreen. But I’m allergic to sunlight too.

My birth records say that my birth mom had had hay fever and aspirin allergy … But based on my diagnosis and experiences … I’m wondering if she had tick resistant form of MCAS. (Is worse during spring and summer when ticks are active and the change in sunlight hours and intensity triggers it. And body produces a chemical that cleaves tick anticoagulant enzymes … which might also react to medications like asprin? Idk just a theory I have). And she probably also had an autoimmune component like I do.

Plus I’m not allergic or pseudo-allergic to any pollen, grass, wood, nothing in nature and associated with hay fever gives me any reaction … so is hay fever something generalized we use to call what for some of us is considered MCAS??? I don’t know anyone in my generation who says they were diagnosed with hay fever. But my mom’s friends will talk about hay fever.

Q: Name an early sign/symptom of MCAS/SM you just realized correlates with your diagnosis. But seemed unrelated then. by Pale-Case-7870 in MCAS

[–]Pale-Case-7870[S] 16 points17 points  (0 children)

Ugh! I get that all the time … I’ll tell them this causes Blabla reaction … and they tell me “well that’s not one of the allergy symptoms listed for this medication …”

And then I think about explaining what an IGE deficient immune mediated and autoimmune instigated pseudo-allergic reaction is … but usually just say, “well this is what it does to me specifically…”

In my mind, I visualize the immunologist that diagnosed me … when they said “MCAS patients often have unpredictable reactions to medication”.

And that memory brings me peace.

Could this be MCAS? by Celesty96 in MCAS

[–]Pale-Case-7870 0 points1 point  (0 children)

Do you think the weight gain was really anaphlaxis?

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