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
@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 - 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.
-
Like -
Helpful -
Hug
1 ReactionI 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.
-
Like -
Helpful -
Hug
1 Reaction@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
Perhaps another name for that type of dr is one in integrative medicine?
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.
-
Like -
Helpful -
Hug
1 ReactionYes, 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.
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!
With an antibiotic resistant strep infection, be careful of any drug that lowers, instead of strengthens, the natural immune system. Many drugs only mask the symptoms, while the microbes behind the issue come back with a vengeance.
The only similarities we have is an undiagnosed condition. My onset was a high fever and a rash for a few days. This was Winter 1991. My doctor did a Lyme test but it came back negative and no one ever did another one. The fever never came back, but the body aches, joint pains which moved around to different parts of my body for the last 27 years and are still ongoing are very debilitating.
After 27 years I moved to Houston-Galveston area. My doctor here ordered a Lyme test and it came back with all kinds of red flags. The lab results, somehow, could tell I had Lyme and Rocky Mountain Spotted Fever 20+ years ago.
Since then I've read, and been told, that the lab one uses makes a HUGE difference. So, I was thinking you might want to have some tests run again and sent to a different lab.
If you are interested, let me know and I will get you the lab name I was given. I am now battling Morgellons which I've read is a close connection to Lyme.
Hope for the best,
Elizabeth