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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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@lily2013, Hi. I have just joined this site, so I am hoping by now that you have a diagnosis. Reading your history is like reading my own early history. I have Sjogren's syndrome, which can be difficult to diagnose, does not always show anything in blood work and a great many doctors had never heard of it when I got sick and had no idea what ws wrong with me. Have you, since you posted, developed other symptoms besides the swelling? Such as dry eyes, dry nasal passages, dry mouth, painful mouth, etc. I am very interested to hear from you and very concerned for you, since I wish noone to go through the extended diagnosis process that I did. I have also been now diagnosed with other autoimmune illnesses.Be well!
@contentandwell I agree with you in so many ways, but when I had Legionaires my small town doctor recognized it immediately, when it had been missed at large hospital. He started treatment immediately with three other doctors saying no they didn't think so. He insisted and saved my life. This was very early on when it was hard to diagnose and almost all who had it did not survive. 1982. After he died, I was helping his wife to get her books in order and I mentioned how he had saved my life and she told me that he read constantly, every new thing that came up, he was very reponsible that way, so I was blessed to have him. Lately, I’ve been doing some. reading about possible long term after affects of the disease. I don't know much yet, but plan to keep studying this. We definitely need to be our own advocates and to take casre with our families too.
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3 Reactions@gemmax things were different in 1982. Now almost all PCPs work for the hospital, there are virtually no private practices anymore, so when you have something serious like Legionairre's you end up being treated by a changing stream of hospitalists, not the doctor whom you carefully chose and built a rapport with. When you go into the hospital, your PCP is "hands off". PCPs are now like businessmen, they work 9 - 5 and that's it. They actually have it better than most businessmen because they don't ever end up working overtime! I think it has made for less caring physicians.
You are right, now more than ever we need to be our own advocates.
JK
@gemmax By the way, if you do hear of any long term effects please let me know, I am definitely interested. I had no idea there might be any.
JK
@contentandwell Yes I sure will. I Just discovered an article on this. I have alot of health problems, but I did not connect them at all to Legionaires, except, of course, autoimmunity, which is a common and sadly lifelong result of having had a severe infection.
@contentandwell Yes I am very much aware of the changes and they continue. It must be difficult for doctors too who are trained in one field and end up sending their patients off to innumerable specialists. Many hospitals use revolving ER personnel that are shared with other clinics and hospitals, so that means that the ER doc rarely has no clue who you are. I am blessed to have had the same doctor for 15 years, but I also see a number of others in a variety of fields. Sometimes zifeel as if that isall that i do. And that is enough to cause a peron to get depressed if they were not before!
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1 ReactionI agree. I see so many specialists. Now and pain mgt to the list
At the university I go to, for RA and now my back, blood work is done about a week before my appt. I also see oncologist . For study of blood work.
@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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1 ReactionMost 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.