Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
Hello, I'm so sorry for your suffering and hope to learn that it has come to an end? Did you get an accurate diagnosis? I too am suffering from the exact same thing as you and nearing 3 years. I'm desperate for answers. Thank you
Hi @basslakeview you may have noticed I removed your personal contact information from the post in order for you to avoid unwanted spam. Instead we recommend using the private message function. However, I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other.
-
Like -
Helpful -
Hug
2 ReactionsWhat about going to an allergist. I know it doesn't seem like an allergy, but sometimes we can be surprised. When your neck swells, does your tongue or throat also swell or have you already been asked these questions? If so, I apologize.
My page is in "Skin Conditions" section, then under "Morgellons Disease and other Parasite Problems" (or something similar...I cant remember the exact title right now (brain fog), but Morgellons and Parasites is in it).
I just found out I have had Lyme Disease and Rocky Mountain Spotted Fever for 27 years. I doubt I will ever be "normal" again, but I do feel better as far as the pain goes. 2016 is when the Morgellons started. But it is treated the same as Lyme.
Now I am trying to find out how to get rid of the biofilm which is like a cocoon all over my skin and from what I've read on the NCBI, MEDSCAPE, NIH, ETC, the biofilm is also around the organisms, mainly trying to protect from the antibiotics.
People who have had their knees replaced or other parts of body replaced also have this serious problem. Biofilm is a major issue with implants.
Elizabeth (Texas)
-
Like -
Helpful -
Hug
1 ReactionBTW: Have you been to an Allergist?
Elizabeth in Texas (near Galveston)
-
Like -
Helpful -
Hug
1 ReactionSend me some photos and I will either take to my doctor next time I go or I also have her personal email address.
I may just send that way (email) since I only saw her last week. Usually go every 3 months.
On antibiotics now. Probably for years, but we have to watch kidney and liver functions once a month. (Kidneys and Liver do not like antibiotics.)
https://www.ncbi.nlm.nih.gov
-
Like -
Helpful -
Hug
1 ReactionHint: when you do a search on NCBI use as few words as possible (which you probably already knew).
-
Like -
Helpful -
Hug
2 ReactionsOops!!
Here is website address and they dont use a separate search for each website connected to this one which makes it much easier to keep up with. You DO have to join if you want them to send you what it finds to your email. Very easy and you do not have to be a scientist, doctor or highly educated person to join. But it would help in understanding some of the science jargon/language. I just try to read between the lines if I do not understand just look up words in medical dictionary you can find online if you do not have an app.
https://www.ncbi.nlm.nih.gov
-
Like -
Helpful -
Hug
2 ReactionsKeith, I wrote a very long reply. Had to leave to get you a website address. When I came back it was gone, but I am still lopking for it. In the meantime here is the website address where I found A LOT of VERY USEFUL INFORMATION if you csn learn how to use the Search. You seem like an intelligent person so I bet you can.
Ive been having problems with my eyesight so I've been searching for "biofilm on eyes" since I have Lyme and Morgellons x 27 years.
-
Like -
Helpful -
Hug
1 ReactionThis is Keith Walker. I sent you my contact info via Private Message. Have a nice day!
-
Like -
Helpful -
Hug
1 Reaction@ginjax28 and @keithwalker - you can send a private message to each other to share contact information.
How to send a private message
-- https://connect.mayoclinic.org/get-started-on-connect/#send-private-message