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Facial Swelling - no diagnosis
The illness that I am about to write about has occurred over the last two years and is still ongoing. Two years ago this month I noticed the beginning of facial swelling. It started on both eyelids and then migrated to both cheeks and then to my Parotid glands. Within two months my face was noticeably puffy and swollen. To this day, the facial swelling is still there and NO other parts of my body have been affected.
Initial trips to my primary care physician, Emergency Room visits, two ENT’s and an allergist yielded zero results and no opinions of what was possibly wrong. Following that I made the decision to go to a holistic doctor. He ran multiple blood tests, allergy tests(high yeast count which prompted him to put me on the Candida diet; this did nothing), thyroid tests (low Normal results, he suggested Synthroid but recommended the diet initially). Acknowledging that there may be something bigger than he could handle he recommended me to a special diagnostic clinic at Emory Hospital in Atlanta.
The unit at Emory consisted of a number of specialists who saw patients with undiagnosed conditions. The disciplines they represented included; ENT, Hematologist, Rheumatologist, Endocrinologist, Immunologist. Over the course of three months I had individual appointments with each group. The bloodwork that each doctor ordered came back with no indication of any illness outside of a low white blood count and low platelet count. As part of this process I also had chest x-rays, biopsy of sub-mandibular gland, head and neck CT scan, Bone marrow biopsy which also came back normal. I left Emory because they told me that they couldn’t identify what was wrong with me and frankly didn’t have any defined next steps.
I then decided to go to an infectious disease doctor and all of the tests that were run came back negative; Lymes disease, infections etc… The doctor could clearly see my facial swelling and she recommended that I go back to a rheumatologist, which I did.
The Rheumy, who I have been going to for the last 5 months, reviewed all of my past history of blood test results and previous doctor’s notes. He diagnosed me with what he termed an immune deficiency which he felt was manifesting as an auto-immune disease, even though all my blood work never revealed any markers for any known auto-immune diseases and I don’t exhibit any symptoms from the neck down. He prescribed a course of Prednisone over a 6-week period/20mg/10mg/5mg (facial swelling was extremely responsive and face looked normal BUT swelling returned within three days of going off the steroids). He then prescribed plaquenol with a low dose of prednisone(5mg) which I have been on for 90 days now and the swelling has not gone away. My Rheumy has mentioned going on either, Azathioprine, Methatrexate or Sulfasalazine to see what that would do but I have opted not to because I feel that I need a valid diagnosis prior to taking any drug like that.
I am not sure if this is truly a rheumatological or an endocrine issue. I have exhibited zero markers for a rheumatological disease and only a low normal for thyroid disease. I am writing to see if anyone out there has experienced a similar situation, I am at a total loss as to where to go next. Any shared thoughts and ideas are welcome.
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Lilly2013.....I'm so sorry and I know exactly what your going through. Two years later after being off prednisone and not taking any steroid creams the right side of my face is still swelling. I was wandering was you able to find a diagnosis or help you into bettering your life Have a blessed day.....Everday above ground is a good day
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1 ReactionI just came across this forum and thread. I developed swelling on the left side of my face about 6 months ago. For the most part if feels as if the swelling is localized to a spot on my jaw near by chin. It's almost as if there is some sort of lump or cyst in that area that fluctuates in size throughout the day. I had an ultrasound and CT earlier this year. Both showed nothing with the exception of soft tissue swelling in that area. About a month ago my eyelids started to swell as well. I thought it was allergies because my eyes burn and water if I'm outside for more than 10 minutes at a time, so I went back to my ENT. He ordered a full panel allergy test which didn't show anything except for a borderline allergy to dust mites. Would appreciate any advice on where to go from here because I'm at a loss. I don't have any pain associated with my swelling but it's very uncomfortable.
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1 ReactionWelcome @wanderlust827, I know you must be terribly frustrated after having the different tests and seeing an ENT but still not having any answers or treatment. You probably have already seen this article but I thought I would share it just in case it might provide some possible ideas of what may be causing the swelling.
-- Lump Under Chin: Causes, Treatment, and More - Healthline
https://www.healthline.com/health/lump-under-chin
Have you thought about seeking a second opinion at a teaching hospital or a major health facility like Mayo Clinic?
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2 ReactionsThank you so much for sharing this article. I did find it helpful.
My ENT actually suggested I reach out to a teaching hospital in my state so that will be my next step.
My situation is frustrating, but I also know it could be a lot worse so I am trying to stay positive. 🙂
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3 ReactionsHello.....I wish.....I had more to offer at this point. Two years ago I noticed the swelling in my face and appearance and I proceeded to visit a urgent care and they took Xrays that showed negative. It was one of the worst experiences of my life because I was already depressed at the time ....but only to have him say to me what do you want me to work miracles and the nurses aides make fun of me in the back office. Let's just say at that point I gave up for a cure. Currently today..... I choose to try and fight what ever I'm going through and seeking help ......I have an appt in couple weeks and would be glad to help you and steer you in the right direction for a better life. Have a blessed day and never give up.
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3 Reactionsseems like some of these DR"S CAN NOT FIND WHATS WRONG I read up on apple cider vinegar drink a glass of water with a tespone in it each day vinegar is a independent healer for a many lot of issues try it I do it it helps me with swelling also and my son Barb
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1 ReactionDespite my allergy tests coming back negative I’m still fairly certain allergies are playing a role in my issues. I was just talking to a medical professional today who told me that usually when someone has symptoms like mine it won’t usually show up on an allergy test because it’s caused my some weird preservative or something that’s not included in an allergy panel. She suggested I try taking a Zyrtec/Zantac combo. I’m going to take her advice and will let you all know if it works!
Hi!…..I had the same thing and got a similar response. I went on my own dig and realized I had Mast Cell Activation Syndrome. I self diagnosed and then later got it confirmed. I responded this way to all the shots so no doctor wanted to admit that to me. I have a very limited diet or I get repeated flare-ups esp under stress. I banged it out of myself w the carnivore diet. It worked amazingly well. You might look at all of this! Good luck
Wondering if it might be lymphedema?! A vascular specialist might be able to get you pointed in the right direction.
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1 Reactiondid they test for sjogrens? That's what I originally referred to the ENT for was facial swelling. I've been diagnosed since 2015 and have had sever bought of my face swelling. Including now. Now it's because the saliva in my salivary glands are turning into hair gel consistancy and my salivary glads ( i was told) are going kaput.