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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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I have diabetes, hypothyroidism, sjogrens and non-alcoholic cirrhosis and have face swelling and face cheek pain, TMJ and eustation tube dysfunction. Have you been tested for sjogrens?
Lily im really just praying you get back on hear I have the exact same symptoms that also started in my eyes , i have sooooo much to ask i want to get to the bottom of this my swelling just started but at first it was in my eyes and they said conjunctivitis i went to the eye dr twice them then the swelling spread into the bridge of my nose and into my forehaed and neck but never went further then my neck it flares up so sometimes its very present very weird feeling amd even warm to the touch i went to the emergency room because of the swelling they ran blood and did a catscan nothing out of the normal.....im at a loss i know my body and this is not normal but my blood pressure is always good my labs are good my eyes are good the only thing i take daily is thrive vitamins otjer then that no medicines i was put on a steroid by the eye dr. Intially because she thought allergic reaction the steroid did give some relief but it was a 6 day regimine the first day when i took all 6 steroids is when i felt best and the second day all the other days not really .......
I also have had severe swelling of cheeks, eye lids, parotid gland & glands in neck & whole body. It turned out to be autoimmune & it took me about 2 years to get under control. I also had neuro problems from this plus stomach pain & indigestion. I started taking oil of oregano & grapefruit seed oil & the swelling in my face decreased by about 50%. The doctors all finally said I have RA but my joints don't get inflamed. I did not use steroids as they are so BAd for the body & my specialist at National Jewish Hospital wanted to put me on a med that alters the immune system (makes it weak) so I declined. I went to a functional med. dr. & they changed my diet, put me on lots of things to cure my digestion & I am finally living a more normal life. NONE of the western medical doctors had anything to do with my healing. I went to them for years - all kinds of specialists too. I am reaching out as I wish that you find a cure & can begin to heal. It has been a lot of hard work with functional med dr. but well worth it & I am not on any drugs that can cause bad side effects & only mask symptoms. I hope you can seek the natural route as it is the ONLY thing that has helped me. Good luck & if you need additional help I am here. Lori Banta
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1 ReactionPlease reach out to me by private message. My 15 year old daughter (Jordyn in the post below) had exhibited the extreme version of what you have described in your post 2x now. I have some information that might be helpful to you.
I am working in New York on East Coast time. It would be best to call me after 7:00 PM EDT. Keith
Are you talking to me "Lori Banta"? if so I would love to call you this evening. I live in Colorado & I believe you are 2 hours ahead of me. Why don't you private message me to arrange a time to call? Let me know.
@keithwalker and @vvil198, I'm tagging our moderator @ethanmckonkey to request that he remove your telephone number to protect your privacy and keep you from getting spam calls. If you want to send another member a private message and exchange personal information that is a safe way to share phone numbers and email addresses and guarantee that no one else obtains your personal information.
How to send a private message is covered in the Get Started on Connect guide here:
-- https://connect.mayoclinic.org/get-started-on-connect/#send-private-message
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Thanks @johnbishop
@ginjax28 and @keithwalker, Thank you for being willing to share with each other. You'll notice that I removed your personal phone numbers. Connect is a public forum and we recommend using the secure private messaging to exchange personal contact information. We want to keep you and community safe. Also keep in mind that sharing in the forum allows the support you offer to reach many people.
Thanks for the support you offer.
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1 ReactionThis site removed your phone# & won't let me call you.
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1 Reaction@ginjax28 and @keithwalker - you can send a private message to each other to share contact information.
How to send a private message
-- https://connect.mayoclinic.org/get-started-on-connect/#send-private-message
This is Keith Walker. I sent you my contact info via Private Message. Have a nice day!
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