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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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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.
I 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?
@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 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
Lily,
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 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 ReactionIn 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 ReactionHello @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?
I have also experienced a lot of the same things you are going through to including facial swelling & digestive issues. The ONLY things that help me are oil of oregano, grapefruit seed oil & a very good probiotic at bedtime (never take during meals). I have to watch everything I eat also but since I have been on these 3 products my lifestyle has improved dramatically. All the doctors I have been shuffled around to have been baffled by my facial swelling, etc. I am telling you this as I did not get better at all until I started the above products mentioned. Your stomach issues are most likely caused by candidia infection (fungal). I have been healing my stomach & sinuses as I believe both these areas were infected. I have dealt with this off and on for 34 years now & this is the only time ANYTHING has worked for me. I also drink a protein shake every morning to help with digestion. All my issues started after an infection that ran wild through my body at age 34 & the doctors did surgery, then gave me the largest amount of antibiotics in the history of this hospital. These antibiotics saved my life but wrecked havoc within me ever since. I did not realize all this until last year. I now stay away from antibiotics unless it's a life threat that I need them. Please go see a good Naturopathic Dr. or a certified nutritionist as this is the only true help I have received. Oh, my facial glands were also so beyond swollen that my neurologist thought I Sjogren’s disease & my blood work showed very high levels for RA. My C Reactive protein levels were off the chart also. I see a specialist at Jewish National Hosp. in Denver next week but feel I really don't need to see him now (had to wait 2 months to get in). Anyway I really hope you take what I have said to heart as it may well be the same kind of issue I have been dealing with. I am so thankful for the naturopathic approach or I would still be super ill right now.
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1 ReactionPlease try oil of oregano, grapefruit seed oil & probiotics for your son. I had a lot of the same issues for years & finally found out they were caused by a fungal infection in my intestines & sinuses brought on by way to much antibiotics needed to kill off a bacterial infection. Please try! Have you tried a nutritionist or naturalpathic dr? This is the only way I found the help I needed after seeing neuro dr, & all other specialist drs.
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