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Any Of You Do This? Tongue, Throat, Esophagus


LindaJoy
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Just wondering if any of you have problems with your tongues feeling swollen, but when you look in the mirror, they're not?

And, you're throat feels like it has a lump in it? I've read this one here, that many of you do, but does it ever come with the tongue that feels swollen when it's not?

Also, do you ever feel like your esophagus is so swollen, or twisted, or spasmed, that you have trouble breathing? Does it feel like it's going to come out of your chest? Mine will feel like this, then my bp will go up and my hands will start to sweat, then it goes away.

I'm being tested for hereditary angioedema. I'm terrified. I had the blood work done yesterday. The doc said he's 99.9% sure I have it. Anyone here ever tested for it? If so, what was the outcome?

Thanks, everyone.

Lindajoy

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Hi LindaJoy,

It has been a while since I have posted here but I feel the exact same way. Unfortunately about everyday. It is so scary and I have questioned the doctors about it and they just say it is part of the dysautonomia or my MVP. I just do not feel like this is normal and it frightens me that this will only get worse.

My throat always feels like there is a lump in it and sometimes my tongue feels thick and heavy. I know this sounds crazy to some people but it happens more often than not. I had ask this same question before also and wondered if anyone else experiences this. I would be curious to find out your test results to see if this could be something more.. I will keep you in my prayers..... :)

Take Care

Erica

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It is so strange that you say this because just in the last few day i am getting the same thing. I have thyroid problems and i am wondering if it is from that but i am not sure. I am so sorry to hear you are having these problems but just know you are not alone.

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Thank you, everyone, for your replies. I'm sorry all of you are going through this, as well. You're right, it's scary, very scary. I'll let you all know if I find out why it's happening. I'm hoping it's a mix of allergies, adrenaline rushes, reflux and having just had a recent surgery whereby the doctor went down my throat.

Linda

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THat could be triggering the nerves and muscles to be a little irritated..I too had all of those symptoms they wax and wane... I have had alot of testing done for this no real answers..the owrse thing I can say is when she numbed it for me to try and give me some relief..UGH!!! will never do that again...I tried aloe vera juice to relax it as it coats the throat all the way down..you might try it . THey make it tasteless and reall obviously check with your doc but I do believe it is pretty harmless.

Good luck and I hope it subside for u a bit..

HUGS...Bee

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Hi LindaJoy-

Yep. I've had those symptoms AND I was tested for angioedema, which I did not have. Thank God!

I've had symptoms of anaphylaxsis and have gotten relief from an epi-pen. Have you ever tried one? My allergist is now treating me for Mast Cell Activation Disorder (MCAD) and lots of my autonomic problems and swallowing/breathing problems are much improved. I still carry an epi-pen to be safe.

You've been tested for mastocytosis right? If your skin biopsy and bone marrow test were negative and you still have symtoms, you may have MCAD.

I hope your angioedema bloodwork is negative. I remember waiting for those results was scary. You're in my prayers.

Julie

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  • 2 weeks later...

I lose the ability, I mean like the physical ability to swallow and have to get my esophagus dilated every 8 weeks. It's miserable. I'm not sure why I can't swallow (potassium related?) but I have strictures very high up and mid esophagus.

I had angiodema once, but they never figured out the cause, man it was miserable though. Started out as a hive the size of New York on my butt, of all things and just progressed till I thought I was having a heart attack. I went to a minor ER and he said I had a hive on my butt and told me to take Benadryl. I had never had hives in my life. But by midnight I had them everywhere...including down my esophagus, so I took the benadryl. I ended up having to get a steroid shot and have never had it happen again. It was the strangest thing.

But painful, scary and miserable too. So, yup....morgan

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