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Facial Swelling - no diagnosis

Autoimmune Diseases | Last Active: Apr 20, 2023 | Replies (158)

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@kdubois

Hi @lily2013, I experienced very, very similar facial swelling issues for several years.... very swollen face, swollen and hard submental gland, back of my tongue extremely swollen, etc. I went to tons of doctors and had imaging that showed no cause or reason.

But we did figure out the cause and I now don't have any of these symptoms anymore. Mayo figured out that I have genetic polymorphisms that prevent me from properly-metabolizing most medications, and these facial symptoms (in addition to a laundry list of other symptoms around my body) were caused by my body too-slowly metabolizing medication that then slowly built up inside of me. During my time being sick from this, I was misdiagnosed with an endocrine condition and also had false autoimmune symptoms. To figure this out, I had to have pharmacogenomics testing performed.

Had you started any new medications prior to your symptoms starting?

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Replies to "Hi @lily2013, I experienced very, very similar facial swelling issues for several years.... very swollen face,..."

@contentandwell my mom has Barrett's Esophagus, and it can be a real struggle sometimes. I think you are correct that it can limit the possibility of having a nissen, but it may also depend on the degree of the Barrett's. Mayo tested me for Barrett's because if I did have a somewhat malfunctioning esophagus, they would have limited my wrap to 270 degrees instead of 360 degrees.

Yay for doing the study! That implementation of technology sounds very fruitful. I'm taking part in a study for Mayo for my nissen surgery, too. I figure if whatever they find from us can help other people in the long run, then it's totally worth it.

@kdubois I am happy to be involved in the study even though it does mean more frequent trips to Boston. I am a bit nervous about how I will react to them lowering a tiny camera down my throat on a string. The camera is about the size of pill capsule but the string could be annoying and cause me to gag. Time will tell.
JK

@contentandwell I have a problem with gagging, too. I hate doing the manometry, but it must be done. Yes.. time will tell.

@kdubois Kelly, on top of that I am battling a bad case of bronchitis that won't quit. I cough a lot and have a sore throat. If that is not better by the time of my appointment in a couple of weeks I simply won't be able to do it. It would be good to do it on that day because they scheduled it on the same day I have another appointment there.
JK

@contentandwell here's to hoping for as much healing as possible over the next few weeks!

I had a fall in bedroom in dark. Fell on my back a crused

Sorry hit reply to early. Any wAy fell on my back and crushed 11 Vertabra. I spent a week in hospital and a surgeon visyed me. Would you like to walk and I said yes. He did a proceedure and put concrete in my crushed vertibrae. After proceedure he came to my room. Hevsaidvyouveill walk or you won't. I was helped up and asked. About three weeks later I fell forward on a ceramic floor. I fell head first. I either passed out temporarily. I woke up and called my son. Should have called 911. I was on Xeralto blood thinner. I passed out again. This time I looked like I had been beaten. I got to hospital. And do not remember fall. My daughter said my kitchen. Looked like a murder took place.. I am recovering.

Oh, no, @oregongirl -- you sure have been through a rough time. I'm so sorry to hear this.

What did the doctor at the hospital say about your injuries? Are they connecting your fall with the procedure on your back or with medications following it?

@kdubois Thanks Kelly. I just can't seem to fight this off, I presume due to the immunosuppressants. I was up a lot last night so I am about to go back to bed for a nap. This is really getting old.
JK

@oregongirl Glad to hear you are recovering, sounds like a couple of really horrible falls. I broke a vertebra once and also had the procedure where they put cement in to fill it, kyphoplasty. It seemed to work well at the time but then a couple of weeks later I wrenched my back when I was about to slip and fall and I think I may have dislodged the cement because it was never the same after that and now I have a lump sticking out my back. You don't say if you are back to walking now but I presume you are. I hope you continue to improve and can get back to being your normal self soon.
JK