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Facial Swelling - no diagnosis
Autoimmune Diseases | Last Active: Apr 20, 2023 | Replies (158)Comment receiving replies
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?
Replies to "Hi @lily2013, I experienced very, very similar facial swelling issues for several years.... very swollen face,..."
Most really are kind and caring and want help. it is rare to run into one who should not be doing what they are and even then we have to remember that they only human and most are doing the bet that they csn under the present circumstances.
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@gemmax I see a number of specialists also but I don't think the PCPs around here mind sending their patients off to them at all, except for endocrinologists. My PCP would like me to come to him for my thyroid and mild diabetes. I used to go to a great endocrinologist but he moved away so now my PCP handles it but I think I may find another endocrinologist.
I have numerous specialists at Mass General where I had my liver transplant but every one has been very personable and caring. I do not feel at all like a number of a faceless patient. They seem very caring.
Around here even the doctors who have been in practice for a while now work for the hospitals, they no longer have private practices. If I could find a private practice doctor I would prefer to go to one but the only one I know of is a concierge doctor and is not taking any new patients.
JK