#VocalCordDysfunction #Dystonia #Undiagnosed
I've been dealing with vocal cord spasms that affect my breathing for virtually my entire life. It was once upon a time suggested it might be vocal cord dysfunction, but at the time, my speech pathologist had just learned about the existence of the condition, and little was known about it. It was assumed to be an entirely psychological condition. That never made sense to me.
Later, a friend asked me if I'd ever been evaluated for spasmodic dysphonia, AKA laryngeal dystonia. When I looked that up, having never heard of it, I discovered it sound like me. One of my doctors agreed, but there was no one in my city who specialized in dystonia. My speech pathologist was always too intimidated by its rarity that she refused to diagnose it. My symptoms, while annoying, and difficult sometimes, weren't severe enough to really need treatment, beyond muscle relaxants, even though they sometimes interfered with my ability to speak and later, to swallow. So we decided not to pursue diagnosis. The muscle relaxants reduce the severity of the spasms and the pain, but not the frequency of them.
We operated on the assumption that it probably was dystopia, and explained it as such when need be. That worked for many years. However, a few years ago I started wondering if we had it right, as I'd had a long period of time without any major flare ups. Not sure how long because it all was so common that unless it really demanded my attention, I didn't pay the whole thing much attention. I continued to have regular minor issues with swallowing, and the occasional spasm that interfered with my ability to speak, briefly. Sometimes they would completely wreck my vocal coordination for a bit.
While SD can have short periods of remission, it is not supposed to have long ones. Also it doesn't normally affect breathing, although I see they are discovering a variant where it can occasionally. It is also not supposed to be painful, though my issues always have been. My current autism specialist suggested maybe it was a neurodevelopmental thing I'd grown out of. Also a good possibility given many of my other motor issues. But then about ... maybe 2 years ago, the painful spasms came back with a vengeance! The seem to be largely fatigue related, although maybe it gas gotten more complicated since. I can't take the time to lay down every time they flare at this frequency!
Some of what I've read in this community sounds familiar, but I really don't know anything about vocal cord dysfunction, so I thought I'd ask for advice here. And then go do a Google search.
Any help would be appreciated.