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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 found that water based foods are best. Refraining from starches, breads and all foods that take moisture from the body works.
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2 ReactionsThank you for your insight. I will try this regimen. And find a nutritionist and a naturalpathic Doc.
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2 ReactionsJohn, Those sorts of foods also feed candidia & other fungal, yeast, etc. & will make you sicker. Sugar also very, very bad. I stay away from it as my ears ring really loud & my face will totally blow up, mostly around eyelid & cheek areas. Good to know you will try these natural steps as this is for a cure & not just to cover up symptoms. Feel free to reach out to me anytime. Smiles, Lori Banta
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2 ReactionsHappy New Year to everyone. I am researching the Oil of Oregano and Grapefruit Seed Oil and wondered if there was any good suggestions on where and what to purchase. Grapefruit seed oil seems a bit more difficult to find as there are so many forms of the extracts but fewer of the oil forms for oral administration.
You may want to try Functional Medicine. Contact a Dr James Farley in Mahwah NJ (973) 978-4197. He is an autoimmune specialist.
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1 ReactionJust at the end of last year I presented with facial swelling as well. All of it mostly being my partoid glands on both sides if my face. After 2 months of running test and doing CAT scans and MRIs I finally got the diagnosis of sarcoidosis. It's a rare autoimmune disease. I was treated with a high dose of steroids which was tapered off over a period of two months which did take the swelling down. I'm not sure if this is what you have but it does sound somewhat similar to my symptoms as well. I had no other swelling other than that in the face. The doctor said that it was very rare for it to present the way that it did which is the reason it took them so long to diagnose me. I hope this helps. Best of luck to you.
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1 ReactionI forgot to mention that the final factor for the diagnosis was the results from a blood test they took. It's called the ACE levels. The results for this test took over a week to get back if I remember correctly.
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1 ReactionMy name is Keith Walker and I would like to introduce you to my daughter, Ms. Jordyn Rose Walker. She is a 15 year old child who has a mystery illness. She has been treated in three (3) different hospitals by 100s of medical professionals since 2007 and no one can figure out the root cause of her medical condition. As a matter of fact, after her 2017 episode, she was discharged from the hospital by doctors who assured us this was a “One in a Million Occurrence”. We have had 13 years of medical treatments (for symptoms that is) without any progress toward identification of the root cause of her illness or coming remotely close to a diagnosis. In the last 19 months, the secondary complications of this illness has robbed Jordyn of her sense of taste, smell and most recently, she has lost her sight…she is now permanently blind.
If you Google Jordyn Walker's Cause Research, you can see our Facebook page intended to create visibility to her Illness
I am posting this message with the hope that your research hospital will consider seeing her. We respectfully request you make this post visible to all of your talented autoimmune specialists and research physicians.
I can provide her most recent medical discharge summaries from the New Hanover Medical Center, Wilmington NC (July 2017) and the Kansas University Medical Center in Kansas City Kansas (2018). Additionally, there are photo-timelines for both her 2017 and 2018 episodes, and a 2018 Children’s Mercy Hospital Health History.
Overview of Jordyn’s Medical History:
-at 2 Jordyn was diagnosed with HSP
-at 3 she was diagnosed with Colitis
-at 4 she was diagnosed with Osteomyelitis - had surgery to remove
-at 5 she was diagnosed with Osteoarthritis
-at 6, 7, and 8 she was hospitalized for various bouts with colitis at Children's Mercy South - with no diagnosis
Between the ages of 2-8 she had repeat sinus, ear and bronchial infections between Aug-Dec followed by bouts with colitis the following February each year from ages 5 thru 9 years old.
Between 9 and 13, she had minor bouts of colitis but many less infections. In the summer of 2017, the colitis escalated into an extraordinary reaction that resulted in severe hemorrhaging from here mucous glands, extreme facial edema, and necrosis of the tissue on her face, in her mouth nose and throat which resulted in her loss of taste and smell.
In December 2018, the colitis transitioned much more rapidly to facial edema was followed up with exact same symptoms - uncontrollable runny nose, aching teeth, voluntary facial muscle twitching/failure - which precede the extreme body and facial swelling. The 2018 episode has left her permanently blind, as the swelling damaged the optic nerve beyond the capabilities of today’s medical science to repair it.
Thank you in advance for your consideration.
Thank you for sharing your experience.
I use NutriBiotic maximum GSE (Grapefruit seed oil) liquid concentration w/ full spectrum of bioflavonoids & I get it from Natural Grocers in Colorado Springs, CO. I also get my oil of oregano from them too. I do not have the brand name with me but if you contact any Natural Grocers in the US they can direct you to the best products. The GSE that I use is mixed directl into water & tastes very, very bitter but you can also get it in capsule form. I use the strongest, most powerful oil as I can as I don't have to use as many drops. My facial swelling has gone down abot 50% just from these to things.