Hello.....

I am not new to Connect, as I'm a breast cancer survivor and Connect was a lifesaver for me during my cancer journey. Now I have been diagnosed with Sjogren's Syndrome. It took me over 5 years to get this diagnosis but now realize that I probably had Sjogren's for much longer. It's nice to have a firm diagnosis (but unfortunate to have this at all, of course). My present concern is: Auto Immune Inner Ear Disease...AIED. I'm losing my hearing, have tinnitus, ear fullness and pain and dizziness and lots of anxiety (which makes it all worse I'm sure). Anyone else experience this? Would love to share. Also, since I'm new to Sjogrens would love to share with others on treatments, symptom management, etc. It can be so different for everyone.
My Sjogren's was first detected by an Opthamologist!! I started having trouble with my right eye 2 years ago and 8 opthamologists later, one decided it was systemic and did blood work and an eye biopsy (that was fun!). From there, with a positive ANA test I finally got to a Rheumatologist who got me a firm diagnosis. At this point I have dry eyes, lymphoid hyperplasia of my right eye, dry mouth, swallowing difficulty (which I have had for years and done lots of tests and was told nothing was wrong, except not being able to swallow, ha ha), dry skin, dry cough (getting a CT Lung scan shortly). I have started Pilocarpine and tolerate it pretty well (sweating and chills just after I take the pill). I'm afraid the ear problem will mean prednisone or other drugs and I'm a very bad 'drug taker', I get all the nasty side effects but am willing to try to save my hearing. I have had an MRI/MRA of my brain (I have a brain, all normal so far), have been using Restassis Eye drops for 30 years, OTC eye drops, nasal rinses, lots of lotion, have had a swallow test and other Ear Nose Throat tests and will have more later this week. All was normal a couple years ago, we'll see. I'm grateful to have Medicare now so I can afford this. Cost was stopping me getting this work up done earlier. I'm looking for any/all support. Doctors have limited time and just send you out the door with pills....so these groups are my lifeline. Thank you for the opportunity to share. I will repay your kindness whenever I can.