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Rheumatoid Arthritis (RA) - Introduce yourself and meet others
Autoimmune Diseases | Last Active: Aug 21 5:38pm | Replies (988)Comment receiving replies
@racors I too have RA & OA, but haven't experienced what you describe. However, I also have periodic vertigo, and have noticed if my tinnitus begins to sound like bells instead of buzzing in different tones, I am about tom get hit with a bout of vertigo. Most docs I told that to just look at me like I'm crazy, but my current ENT nodded and smiled when I described it. She said "more people should listen to their bodies."
Replies to "@racors I too have RA & OA, but haven't experienced what you describe. However, I also..."
@sueinmn Unexplained vertigo? If you have RA or other autoimmune issues, it might be time to look into Ménière’s disease.
My own journey with Ménière's disease began two decades ago, marked by severe medical gaslighting. After suffering for years, my primary care physician dismissed my vertigo as psychological, suggesting mental health counseling—even after witnessing an acute attack that left me vomiting in the office sink.
My breakthrough came after a transparent conversation with my allergist, who referred me to an Otolaryngologist (ENT). I was so demoralized by my previous medical care that I began my appointment by apologizing to the ENT for wasting their time. Fortunately, they recognized the symptoms immediately, validated my experience, and confirmed the diagnosis through proper testing.
I wanted to share this here because I have since been diagnosed with Rheumatoid Arthritis (RA), low thyroid, and Osteoarthritis (OA). Looking back, it makes so much sense—research shows that about a third of Ménière's cases have an autoimmune origin. Having RA and thyroid issues significantly increases your risk because the immune system can target the delicate inner ear. Even OA can sometimes complicate or mimic these vestibular issues.
While awareness has improved over the last 20 years, misdiagnosis remains incredibly common. If your symptoms are being dismissed, let this be a reminder to advocate for yourself and seek an ENT.
I also want to share that there is hope. Today, my active vertigo attacks have completely stopped. While I still live with permanent tinnitus and some hearing loss from the disease—and experience occasional mild dizziness that may or may not be related—my quality of life is so much better. For anyone currently in the worst of it, please hang in there. It can get better. Has anyone else here with RA struggled with vestibular issues or a Ménière's diagnosis?
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@sueinmn
SO interesting about your tinnitus.
Even doctors with all their knowledge and training still don't know everything.
On some level, I think everyone with an autoimmune disease is a mystery. Hope we can learn from each other!