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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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Read Anthony William's 1st 2 books.
Sinus issues are anti biotic Strep, and more antibiotics make it even more resistant.
Cut out the mucus-causing gluten, dairy, soy & microbe-feeding eggs, and then triple the dark greens, berries, and fresh fruits
(incl snacks every 2 hrs) to rebuild the immune system.
Hint: Smoothies are the easiest way to sneak spinach (etc) into kids!
Yes, or wellness dr. doctors that do not use western medicine but treat with natural remedies. It is no joke as they really do heal people using diew, oils, herbs, etc. Regular western med drs don't know much or anything about healing. They just treat the symptoms. I'm not trying to down play western med drs. Google functional medicine dr.
If this were me and my child has these symptoms, I would also see a dentist or oral maxillofacial dr and an ENT to make sure there isn’t an infection causing the swelling.
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1 ReactionPerhaps another name for that type of dr is one in integrative medicine?
@ginjax28 I have no familiarity with the types of doctors you mention, but some type of specialist definitely needs to get involved, as soon as possible.
JK
I went through all that you have described & more for over a year without any results from any specialist doctors. I just found out I have high markers for autoimmune disease. But I started treating this issue of swelling naturally as NO dr. could get swelling to go down & had no clue why all the swelling. I had to heal something that was going on in my stomach to get some of the swelling to go down. After getting on protien shakes, going on a strict diet of no red meat, no dairy, no bread & taking large doses oil of oregano & grapefruit seed oil + flax seed oil, I can say I am finally feeling about 85% better. It was a long process & i refused to take the Malaria medicine the RA dr wanted me to try, I also did not take any antibiotics, etc. to help cure myself. I am not saying don't do what doctors want but be careful.
Also, look into fungal infection in sinuses as this can cause the swelling. Getting a functional med. dr involved is a great bet your son may heal a lot faster. That is what I did. I am so sorry you have to watch your son struggle but please FIGHT for him & I mean be DEMANDING & PUSHY as you can. I had good doctors say they did not know what to do for me & I thought I was going to die. Please call in a funtional med dr or natural path dr.
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1 Reaction@vvil198 - If Kaiser only allows you to take your son to a Kaiser facility you may want to try St. Judes or Shriners. He definitely needs to be diagnosed.
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1 Reaction@vvil198 This sounds very distressing. There is nothing worse than when there is something wrong with one of our children, whether they be youth or adult. You say Kaiser, must you use Kaiser or do you have other options like @tinkerbell mentioned? I would definitely get to a major medical center, one that is highly regarded. I went a long time without a diagnosis and things did turn out fine for me but I know now that if I ever have something that is not diagnosed in a reasonable amount of time I will be off to the city.
If you are able to make progress in finding out what the problem is please let us know. I am truly concerned for your son.
JK
@vvil198 - Do you have any university hospitals close to you or are you close to any of the Mayo Clinic facilities? This is always so frustrating not getting any help from your regular doctors.
My 15-year-old son has suddenly developed facial swelling on his forehead and sealing his eye. I have taken him to the emergency where they did a CT scan, blood tests that came back negative. They have put him on Doxycycline and Claritin. It's been over a month and the swelling looks like it's getting worse. The doctors we've seen at Kaiser have explained that they don't know what's going on. Our general doctor referred us to a dermatologist and the dermatologist has also shared that he doesn't know how to help. As a mother, I know in my heart something is severely wrong. Does anyone have any suggestions in the direction I should be seeking?
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