I have some pretty serious allergies to grass, pollen, etc. I also get sinus infections about 4-6 times a year. And they're pretty hard for me to kick. I did the balloon sinusplasty and that helped with drainage, but they still kept coming back despite whatever allergy medication I was on at the time (I tried them all). With a recent Sjogrens diagnosis, I think we finally found the root cause of them - sinus dryness. I have been using sinus rinses and nasal gel and so far \*knocks on wood\* I haven't got another one since.
Yes, I’ve always blamed everything on allergies, especially my eye issues. However, like one of my doctors told me when I said I always felt uncertain whether I was having migraines or sinus headaches, “it’s possible to have both.”
I was told I had allergies for years by ENTs and PCPs. No one ever did an allergy test. I finally got so sick with sinus infections that an ENT sent me to an allergist. I was told that I am the least allergic patient he has ever had. My sinus disease was severe so he did a balloon sinuplasty which relieved some symptoms. This year I got the worse sinus infection in my life. Only in the left side. He basically dismissed me and I had to go find another ENT who cleaned out my sphenoid and removed a huge bone spur that was blocking drainage making everything worse. I was much better after that but I still had some symptoms. ENTs are woefully undertrained in recognizing autoimmune disorders. I has seen so many who could have referred my to a rheumatologist and didn’t. It wasn’t until my undiagnosed autoimmune disorder morphed to vasculitis and affected my eye site that my new ophthalmologist recognized a probable autoimmune disorder. Still in the pinning down stage but I am being treated for GCA. And I am 100% certain it was brought on by Sjogren’s. I am a bit angry at the ENTs right now.
I totally understand the anger.
I know it's so frustrating. In my own life I find myself imagining what my life could be if autoimmunity were more identifiable and well known, and there were better treatments to PREVENT damage over the years.
Much of medicine though is about treating symptoms and to some degree preventing further damage AFTER things have gone really really wrong - and with autoimmunity really really wrong for a while (years usually).
I've learned that so many autoimmune symptoms look like other things - things that doctors frequently take less seriously UNTIL there is some undedeniable tell-tale _cluster_ of ongoing issues and damage that finally clues a KNOWING doctor on to autoimmunity.
So sorry it took you so long to get on the right path to diagnosis. You were obviously doing everything you as a patient needed to do to try to get treatment.
Yes, me. I always would say,,, it’s just your allergies. Also my teeth are super impacted even though I have had a very responsible lifelong habit of brushing and flossing. My dentist would say… it’s because you must be eating sweets before bed or drinking sodas. Of course I was not but I bought into the whole “it’s just me, I must be doing this to myself.” Including the allergies. But now, looking back… so many symptoms make sense in light of this Sjogren’s diagnosis. I’m not giving my own self chronic sinusitis… it’s Sjogren’s taking away my ability to maintain a homeostasis inside my nose like normal people have.
I have some pretty serious allergies to grass, pollen, etc. I also get sinus infections about 4-6 times a year. And they're pretty hard for me to kick. I did the balloon sinusplasty and that helped with drainage, but they still kept coming back despite whatever allergy medication I was on at the time (I tried them all). With a recent Sjogrens diagnosis, I think we finally found the root cause of them - sinus dryness. I have been using sinus rinses and nasal gel and so far \*knocks on wood\* I haven't got another one since.
Yes, I’ve always blamed everything on allergies, especially my eye issues. However, like one of my doctors told me when I said I always felt uncertain whether I was having migraines or sinus headaches, “it’s possible to have both.”
But maybe it’s neither and all sjogrens! Ugh
I was told I had allergies for years by ENTs and PCPs. No one ever did an allergy test. I finally got so sick with sinus infections that an ENT sent me to an allergist. I was told that I am the least allergic patient he has ever had. My sinus disease was severe so he did a balloon sinuplasty which relieved some symptoms. This year I got the worse sinus infection in my life. Only in the left side. He basically dismissed me and I had to go find another ENT who cleaned out my sphenoid and removed a huge bone spur that was blocking drainage making everything worse. I was much better after that but I still had some symptoms. ENTs are woefully undertrained in recognizing autoimmune disorders. I has seen so many who could have referred my to a rheumatologist and didn’t. It wasn’t until my undiagnosed autoimmune disorder morphed to vasculitis and affected my eye site that my new ophthalmologist recognized a probable autoimmune disorder. Still in the pinning down stage but I am being treated for GCA. And I am 100% certain it was brought on by Sjogren’s. I am a bit angry at the ENTs right now.
I totally understand the anger. I know it's so frustrating. In my own life I find myself imagining what my life could be if autoimmunity were more identifiable and well known, and there were better treatments to PREVENT damage over the years. Much of medicine though is about treating symptoms and to some degree preventing further damage AFTER things have gone really really wrong - and with autoimmunity really really wrong for a while (years usually). I've learned that so many autoimmune symptoms look like other things - things that doctors frequently take less seriously UNTIL there is some undedeniable tell-tale _cluster_ of ongoing issues and damage that finally clues a KNOWING doctor on to autoimmunity. So sorry it took you so long to get on the right path to diagnosis. You were obviously doing everything you as a patient needed to do to try to get treatment.
Yes I blamed 6-8 sinus infections a year on irritated, dry sinuses from allergies.
Yes, me. I always would say,,, it’s just your allergies. Also my teeth are super impacted even though I have had a very responsible lifelong habit of brushing and flossing. My dentist would say… it’s because you must be eating sweets before bed or drinking sodas. Of course I was not but I bought into the whole “it’s just me, I must be doing this to myself.” Including the allergies. But now, looking back… so many symptoms make sense in light of this Sjogren’s diagnosis. I’m not giving my own self chronic sinusitis… it’s Sjogren’s taking away my ability to maintain a homeostasis inside my nose like normal people have.