Lupus and the Unknown
Last updated: August 2023
After I had COVID, I noticed that the right side of my face was a bit swollen. I informed my rheumatologist about it and he said with flares this does occur so I shouldn’t panic. At the time of my flare, I also had shortness of breath and had chest pains. So, I was prescribed steroids. The steroids helped with the shortness of breath and chest pains but my face was still swollen. My face didn’t hurt, it wasn’t uncomfortable, one side of my face just looked bigger than normal so I just left it as is.
I didn’t have an appointment with my rheumatologist set until 2 months later so I just began googling and searching the web as to what was going on with my face. So many things popped up: blocked salivary gland, swollen lymph nodes, Sjogren's syndrome. I tried massaging my face, eating lemons, sucking on lozenges, but nothing really helped. I also then began noticing that my mouth was really dry. No matter how much water I drank, my mouth was just super dry.
Fast forward to my rheumatology appointment and I was still had the same symptoms. He felt my face and confirmed that there was something off. He was pretty sure it was an issue with my salivary gland, since steroids usually helps if it’s a lymph node issue. Because he could not pinpoint exactly whether it was a lymph node or a salivary gland he had referred me a head/neck doctor. I brought up the idea of Sjogren's and he said it was a possibility. Lupus and Sjogren's overlap and many people have both. I also asked many people online and they said the same thing.
On the day of my appointment with the head/neck doctor I was a bit anxious. It had been a few months since this all started and I felt I was one step closer in finding an answer. I was first met his nurse practitioner who went over my medical history and all the medications that I was taking. She felt my face and also confirmed that it was swollen.
Then I met with the doctor. He checked my face and surprisingly he said both sides of my face were swollen, but my left wasn’t as swollen which is why it was hard to tell. He said it was my salivary glands that were swollen, not my lymph nodes. He then checked the secretion of my saliva and said it was all clear meaning it was not an infection. He did other various tests and everything seemed ok. We discussed the possibility of Sjogren's and he agreed it was a big possibility. We did bloodwork that day and it did confirm that I had the antibodies.
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He then scheduled an MRI of my neck so we could tests and get further confirmation as to what was going on. The MRI suggested Sjogren's as well but because the size of the nodule was almost 3cm it was concerning. They wanted me to do a biopsy to rule out lymphoma or a primary salivary gland tumor to be sure. My biopsy was scheduled within days and I had to do a fine needle aspirate biopsy. The preliminary results were good. The pathologist said it all looked good and I shouldn’t worry and it was looking more like Sjogren's. I met with the head and neck doctor again and he said the same thing. But, said they were going to send out the samples for further samples just to be extra sure.
Unfortunately, the report came back and although they had thought everything was fine, my samples came back compatible with Non-Hodgkin's Lymphoma. I began crying seeing those words. I knew it was a possibility but, didn’t think it would be that. All the signs were pointing to Sjogren's. But, my report said otherwise. I now have to undergo a core needle biopsy and I am hoping the initial report is wrong. I also will be getting a second opinion. I hope its my lupus or something else that is masking the real culprit. But, the unknown of this all is just scary. But, I am thankful for my care team, family and online community for all their support.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?