Facial Swelling - no diagnosis

Hi @hopingforanswer and welcome to Connect. You may have noticed I moved your post to this existing Facial Swelling discussion so that you can see what others have said about this with similar symptoms and experience. Simply click VIEW & REPLY in your email notification to get to your post.

This facial swelling must be so frustrating and even more nerve wracking as your wedding approaches.

I wanted to tag fellow Connect members @ginjax28 @jessicap42 and @keithwalker as they have had similar experience and may be able to offer you support.

Back to you @hopingforanswer how long has this swelling been going on?

@hopingforanswer Hi. First, let me welcome you to Connect. I have not heard of your problem so I have nothing helpful to contribute, but I hope someone out there may have had similar experiences. I know too well that some symptoms can be related to something totally different that you would never imagine. For instance, prior to being diagnosed with non-alcoholic cirrhosis my hands were shaking badly. The doctor said it was essential tremor, but it was not, it was from the cirrhosis. Not even the doctors connected that despite it being a typical cirrhosis symptom.

I don't see where are from, but if you are relying on local doctors, I suggest you make the effort to go to a major medical center, preferably a teaching hospital. They see so much more, so they know more. I live in southern NH and my local doctors were mystified by my symptoms, it took a very long time for a diagnosis. I now know if I have anything mysterious again I will head straight to Boston. At this point I go there for most of my specialty care.

I know how self-conscious you must be about this, you want to look the way you look without the swelling, but I do want to tell you that for someone who does not know you otherwise you are still a very attractive young woman. I would not look at you and think that your face was swollen.

I sincerely hope you are able to find the cause of your swelling and get it remedied. Please let us know if you do find anything out.
By the way, my under eye area tends to be very puffy looking and I have come to realize that if I can make myself sleep on my back it is much less so. I have no idea, but perhaps the way you are sleeping could exacerbate it?

Again, please do get back to us. We on Connect really do care when we hear stories such as yours.
JK

Thank you - I have been to Jewish National Hospital & have a very good neurologist also. I use a very smart functional med. dr. & he is the one who is getting me back on track more so than any of the other drs. I refuse to take the poison that specialist in Denver wans me on. I am doing much better now but still have to continue to strictly monitor my diet & use natural remedies, no exercise besides walking as it brings my heart rate up to high & my mast cells start dumping to much histamine into my bloodstream. It is a very confusing health issue but I would be very ill right now if not for the functional med. dr.

Dear lilly2013, Please look into what this person wrote to you. Do you have any other gauge symptoms, or perhaps unexplained weight gain, esp above the waist? Cushing disease and Cushing syndrome are not common and thus can be undetected.

@ethanmcconkey thank you for connecting me on this chain. We recently realized that my symptoms seem to coincide with the beginning of my menstrual cycle (it has been happening at least once a month for six months, progressively getting worse, most dominant on the right side and I also get a rash on my elbows- not sure if this is related). Before the swelling starts, I feel a painful burning of my skin and it becomes extremely red/purple. It can appear as a butterfly rash, but lupus was ruled out via testing. I went to a rheumatologist for extensive testing. Most recently my allergist immunologist suggested that I be tested for something rare called autoimmune progesterone dermatitis in which the body has an autoimmune response to the body’s own progesterone. If this is truly what I have it’s treatable, but the bad news is that I am a month from my wedding and if I have this I will have a major flare up right before which would cause discomfort and potentially swollen shut eyes. My immunologist wants me tested for Autoimmune Progesterone Dermatitis which apparently is a straightforward test in which I’d have a progesterone skin prick test, but so far we can’t find anyone who is familiar with the condition and will do the test for me. I’m feeling desperate because I’m experiencing symptoms right now and am in a window of a couple of days where if it is this could start a treatment plan which could help control my flare up at my wedding.

@hopingforanswer You really are in a time crunch. I hope you can find someone to do the testing quickly and are able to not have concerns on your wedding day. If necessary you may have to travel a distance but it sounds as if finding the cause and being able to take care of it is a very high priority for you. Do what you need to do and hope for the best.
JK

Is it possible for you to travel to a Mayo Clinic location?

I absolutely would if I knew I’d be thoroughly evaluated and tested.

@hopingforanswer -- Mayo Clinic is very good at diagnosing difficult to diagnose health conditions using their patient centered approach. Here's some information on their patient centered care - http://history.mayoclinic.org/toolkit/mayo-clinic-model-of-care.php

If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Thank you, I’m going to call and see what they say.