![]() ![]() I started retreating from life and isolating myself. It was getting more difficult by the day to hear anything over the noise of my internal organs. I could also hear the mechanics of the muscles in my throat as I swallowed. Then, my body adjusted its own walking, so the balls of my feet would hit first. After that, it was the sound of the heels of my feet connecting with the ground or floor beneath me as I walked. It finally got to a point where I could barely function or hold conversations with people, as my brain fog worsened. The more animated and excited I’d become, the louder my heartbeat would get. The sound was nauseating-a mixture of grinding, whooshing, and fingernails on chalkboards. The first time I heard my eyeballs moving, I thought, “There’s no way I could’ve just heard that.” I sat there for a bit, looking from side to side, to see if the noise would stop. Or worse yet, over the side of a bridge, as I wrestled with suicidal thoughts and ideations I’d never experienced before. It almost sent me into a psychiatric hospital. Hearing my organs moving and functioning was so disturbing and debilitating that this symptom combined with every other symptom I was experiencing reduced my life to one of survival and scarcity. However, the one symptom I was experiencing that could only be connected back to SSCD was autophony. I was also experiencing other identifiable MS symptoms, such as numbness and tingling sensations, Lhermitte’s sign (which feels like an electric shock), and muscle spasms. MS and SSCD share symptoms, such as fatigue, acquired nystagmus (uncontrollable rapid eye movements), migraines, vertigo, and balance loss-and I was experiencing all of these. ![]() A common clinical symptom of SSCD, reported by patients, is the abnormal amplification of internal body sounds, such as heartbeats and eye movements.” Hearing internal bodily sounds is called autophony. The UCLA website adds, “The thinning or absence of bone located in the semicircular canal triggers vertigo, hearing loss, disequilibrium, and other vestibular and auditory symptoms. The condition is usually diagnosed in middle age, though it has been seen in small children. Healthy individuals have two holes or ‘mobile windows’ in their dense otic capsule bone, but those with SSCD have developed a third hole.” The exact cause of SSCD is unknown. UCLA Health defines SSCD as “a tiny hole (dehiscence) that develops in one of the three canals inside the ear. While my MS diagnosis took about eight months, my SSCD went undiagnosed and misdiagnosed for almost nine years. I am in my early 40s and diagnosed with both multiple sclerosis and superior semicircular canal dehiscence, a very rare inner ear disease affecting 1 to 2 percent of the world’s population. I think back to those times when I was seeing two or three doctors each week, and I can remember one specialist smiling at me and saying, “Yours is a complicated and special case.” At that time, I didn’t realize how right he was. There was an otolaryngologist, neuro-ophthalmologist, neuro-psychometrist, rheumatologist, clinical psychologist, audiologist, and neurologist, among others.Īnd the tests were never-ending: from evoked potential tests, MRIs, and batteries of blood tests to vestibular-evoked myogenic potential and neuro-cognitive testing.Ī decade later, the doctor visits and medical testing continue, but the frenzied pace has slowed and I can finally breathe again. Over the next eight months, I sat in offices answering questions and completing tests, while medical specialists sat baffled. I also got off that plane with no idea I would straddle the line between a nondisabled and disabled identity for the rest of my life. In June 2010, I stepped off a plane in Los Angeles with a painfully full left ear, muffled hearing, throbbing eyes, vertigo, and a migraine.
0 Comments
Leave a Reply. |
AuthorWrite something about yourself. No need to be fancy, just an overview. ArchivesCategories |