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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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Hello @agoodmind4u -- welcome to Mayo Clinic Connect. I'm sorry you haven't been able to find an answer to the facial swelling yet but it sounds like you to have identified the probable cause. Others have mentioned the FODMAP or low FODMAP diet for IBS. While we wait for other members to respond to your post, I did find some information on Mayo Clinic's website that may be helpful.
The role of lifestyle-related treatments for IBS
-- https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/the-role-of-lifestyle-related-treatments-for-ibs/mac-20431272
You mentioned eating very little and changing sleeping positions. Have you made any changes to the types of foods you eat?
In October of 2013 I began to notice a swelling on both sides of my face. I didn't identify this with any other issues. When it persisted I went to the ER on numerous occasions due to pain, pressure on my head and eyes and inability to sleep normally. Antibiotics, steroids and surgery to explore facial glands.
I soon discovered, on my own, that my swelling was directly related to the digestive issues I face on a daily bases. I have been diagnosed with GERD, Irregular Bowel Elimination...I have been on multible digestive medications and am now taking Linzess. My swelling persists and gastric issues also. I try to balance them both by eating very little and sleeping sitting up or contorted.
I am a vocalist who has studied as a classical Tenor. This condition has placed great strain and pressure on my body, mind and spirit. It is difficult to sing with freedom and liberty. I really need some assistance.
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1 ReactionAlso went to eye dr specialist who thinks swelling of eyes and face are from sinus issues that can’t really be explained. Again, fungal issues can cause the swelling.
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1 ReactionLily,
I have also had severe facial swelling for the past year and had a lot of gastrointestinal issues. I do have high markers for RA and my c reactive protein levels are off the chart but I do not have RA symptoms. Do you have histamine issues from food, skin care products, etc? I think I have leaky gut and dr thinks this is what has recked havoc on my body. I am not taking any meds but am doing natural route to heal gut. My facial swelling is now reduced by about 40%. I am on oil of oregano and grapefruit seed oil. I also have possible candidiasis in gut and sinus areas. Probiotics are also helping facial swelling. Maybe you should check into this more.
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1 Reaction@lily2013 Your poor son. Is he a teen? Those can be very tough years. My daughter took Accutane 3 times for acne. I used to feel so bad for her, there were days when she begged me to let her stay home from school, and I would have if the problem would have resolved in a day but of course it would not. When I think of those days it really breaks my heart. She will always have some scarring on her face.
JK
@lily2013
Hi Lily. I just happened to see your post while searching for answers for the same problem my son has. He too has been to every modality under the sun with no real answers. The only thing different with him is they actually biopsied his face and found mucin cells in the pathology. This has been going on for over 3 years with still no answers. All of his test have been negative or normal as well. I actually tried to get him in to see someone at Mayo, not knowing you need a referral, but we were told we couldn't be seen. Not sure why, but whatever. Steroids also seemed to help him, but as you know they won't and shouldn't keep you on them indefinitely. He is currently on accutane to see if it will help. Although he doesn't have bad acne, the dermatologist wanted to try this as a last resort. It's helping a bit, but not going back to normal by any stretch. Being a young man it's horrible to have this happen and look so strange. He's very self-conscious of it and we are both frustrated beyond belief that no one can give us any answers. I'm hoping you have gotten some answers that we could maybe pursue as well. I appreciate any help!
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1 ReactionI too have had similar symptoms. I highly doubt it has anything to do with PPIs or any medication of that sort. Have you @mmurphy99 taken any medications long term to make you think its causing the swelling to your face?
Just found your post trying to google same swelling. Started 6 weeks ago in cheeck than eyes and rest of face. Er couple times,ent, dermo ,maxiofacial , ct scan , xray, tons of blood work amd nothing. Steroids help(never returns to normal) as soon as i m done face blows up.
Most really are kind and caring and want help. it is rare to run into one who should not be doing what they are and even then we have to remember that they only human and most are doing the bet that they csn under the present circumstances.
@gemmax I see a number of specialists also but I don't think the PCPs around here mind sending their patients off to them at all, except for endocrinologists. My PCP would like me to come to him for my thyroid and mild diabetes. I used to go to a great endocrinologist but he moved away so now my PCP handles it but I think I may find another endocrinologist.
I have numerous specialists at Mass General where I had my liver transplant but every one has been very personable and caring. I do not feel at all like a number of a faceless patient. They seem very caring.
Around here even the doctors who have been in practice for a while now work for the hospitals, they no longer have private practices. If I could find a private practice doctor I would prefer to go to one but the only one I know of is a concierge doctor and is not taking any new patients.
JK
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