For the last two years during these appointments, I have tried to explain that it at least felt like there were two different problems going on and two different sets of symptoms; the neurological aspects of autoimmune disease and something else that was causing what felt like an ear infection and ear pressure. But doctors, as I have so often experienced, do not always spend the time to figure out if what the patient is saying is actually accurate nor to really investigate what might be causing a patient’s symptoms. To make it more complicated--and more frustrating--my allergist and my internist on several occasions would look in my ears, find them red and inflamed, diagnose me with an ear infection, and put me on a course of antibiotics. This might help for a few weeks, but then the symptoms would return.
Then I met the ENT doctor. He was pleasant and very interested in my medical history. When he looked in my ears with the otoscope, he said “I think I know what is going on here.” He then used a nasal endoscopy to look at my sinuses, throat, and ears and see if his hunch was right. At this point, I did not know what his hunch was, but I was glad to hear he had one. The doctor explained that I had eustachian tube dysfunction, which is suspected to be one of the primary causes of ear pain and pressure in Sjogren’s patients, as I wrote about here. He also diagnosed me with chronic sinusitis. Because the conditions are chronic and not acute, antibiotics would not provide a long term solution. And so the doctor came up with the following plan to get started and see if he could treat these two related issues.
1) He gave me a prescription for two new nose sprays: a steroid and an antihistamine. I was already using a steroid nose spray, but he felt this one would be more effective.
2) I would need a CT scan of my sinuses to get a better look at them. (I was not crazy about needing another scan, but it turns out they had never looked at my sinuses and given my ear problems and pain level I’ll do it.)
3) Additional blood tests for allergies to see if the chronic sinusitis might be partially allergy mediated.
One of the most notable differences between this appointment and others I have had was the interaction and mutual dialogue between physician and patient. My new ENT appreciated that I was a knowledgeable, well informed patient and said he learned a lot from my complex medical history. While I don’t want to be too optimistic, I am really hoping this will be the beginning of some progress on the treatment of my now officially diagnosed eustachian tube dysfunction and chronic sinusitis.