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Sjogren’s Syndrome – Introduce yourself and meet others

Autoimmune Diseases | Last Active: Dec 3, 2023 | Replies (621)
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@beckyseattle

Hi, I’m one of the AIED people. I’m a little hesitant to post, it seems like AIED is a gnat compared to the rest of your issues! No wonder you’re struggling with anxiety. AIED, at least as I experienced it, limits itself to your ears. I never had pain, or dizziness (others apparently do). Tinnitus was tempora. I am now deaf but have cochleAr implants in both ears. Not perfect, but I mostly get along fine.
It was a long and crummy trip to get to this point, tho. The beginnings of grappling with it all, and especially dealing wit attempts to cure it via steroids and methotrexate l, were horrible.
How can I help?

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Replies to "Hi, I’m one of the AIED people. I’m a little hesitant to post, it seems like..."
cindylb | @cindylb | Aug 1, 2023

Thank you! Although, what you detail is what I've read so far and it sounds...well...horrible. Do you also have an auto immune condition? My AIED is due to the autoimmune Sjogrens Syndrome (which accounts for my other 'issues'). How well do the implants work for hearing? I'm particularly upset about losing my hearing because......my whole life has been in music, promoting it, playing it and teaching it. My daughter joked I'll be like Beethoven but frankly....I'm just not that smart or talented. I don't want to lose that very important and emotional part of my existence. I'm sorry for your experience. The drug therapy doesn't sound pleasant. I'm not sure what my treatment will be at this point but I do have headaches, dizziness and tinnitus (off the charts). I am seeing my ENT again to rule out any/all other conditions that might also be contributing but the AIED is the biggie. You're so very nice to share with me and I appreciate the support. I guess I'd like to know how long the process was for your condition, if the steroids helped or the methotrexate and how well the implants work to help you hear? Hugs and big thanks.

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