Perhaps I’m borderline autistic—missing social cues. It sometimes takes years for me to realize that my SCA3 problems have all along been commonly referred to using terms that don’t “connect” with me.
Twitch vs. tremor
My right arm biceps muscle recently started gently twitching randomly (not rhythmically) once or twice every few seconds, as long as 24 hours at a time. Is the twitching a result of SCA3? I think so. Taking magnesium alleviates it completely. Should I call it a tremor? I don’t think so, but I’m not sure. I need a few more years to see how this symptom matures. For now, perhaps it is fasciculations or myoclonus. Perhaps it’s the beginnings of dyskinesia.
I’ve naturally gravitated towards having a term that describes what’s happening. I’ve had short-lasting, meaningless, random twitches most of my life. Twitch is a baggageless, descriptive term that simply describes what’s happening.
I was first exposed to the word tremor as a human movement in the context of Parkinson’s disease, where people with the disease develop pill-rolling tremors in the hands. I don’t expect to have that problem, and perhaps I overcompensated with thinking tremor was an entirely wrong term for those like me with SCA3. Many people with SCA3 use the term.
Double vision
A neurologist asked me years ago if I had double vision. Without hesitation, I said no, and there was no further discussion. It took me a few more years to realize that my vision problems (my primary SCA3 problem!) were best described as having double vision, even though it was clear to me that my sluggish eye muscles (thanks to SCA3 and ophthalmoparesis) were making it difficult but not impossible to focus properly. I was supposed to readily identify and call that double vision. This became clear only after it became impossible to focus properly a few years later.
Strabismus
I don’t have strabismus in 2018, but many with SCA3 incorrectly equate strabismus with double vision (strabismus is only one of the causes of double vision), and so they think (assume) that their ophthalmoparesis will improve with strabismus surgery.
As it turns out, most people with SCA3 do develop strabismus (I am developing it in 2021), and so it often doesn’t matter whether they know what it is or definitively whether they have it—they probably do. But if you don’t have it, like me, it can be a bit confusing when “everyone” else does.
Peripheral neuropathy in feet
It took me a few years to fully develop peripheral neuropathy in my feet. Early on, I described what I was experiencing to a neurologist who said there was no correlation to having SCA3. (She was wrong, or there was some broader misunderstanding.)
My peripheral neuropathy started in the fourth toe of my left foot, where it stayed for multiple years, and eventually slowly spread, taking years, across all toes of both feet and then both whole feet, but not higher than my ankles.
Here’s a description I wrote after the first few years of having it:
I cannot discern temperature in my toes and feet. If I walk on a cold floor or spray ultra-hot water on my feet, I feel something that I can’t put into words, but it’s not the temperature (and it feels the same if cold or hot). My touch sensation is fine. There is no numbness whatsoever. This causes me no hardship, but it disturbs me to no end.
Another neurologist told me that there was no such thing as peripheral neuropathy; I was misinformed and doing what some doctors hate (i.e., believing Wikipedia), and what I was experiencing was taught to medical students only as polyneuropathy.
Still, all descriptions of neuropathy make heavy reference to pain. I’ve had peripheral neuropathy for almost seven years, and I’ve never experienced neuropathic pain or tingling—only irritation. It could be that the most common causes of neuropathy (including diabetes, which is well over 1,000 times as prevalent as SCA) do involve pain, hence the near impossibility of meaningful communication with a doctor not extremely familiar with the kind of peripheral neuropathy that comes with SCA(3).
Urinary incontinence vs. neurogenic bladder dysfunction
This could be a case where terminology is not used precisely, because terms can be quite common but still not well understood or used consistently by others.
Urinary incontinence, in the form of overflow incontinence, is when you look down and find you’ve wet your pants and yet had no idea that you even needed to go, and no idea that you went. I could be wrong, but I think this kind of incontinence is what they ask about in ERs and hospitals. Many people with SCA(3) use this term to mean I have to go frequently and urgently, and sometimes I can’t hold it, and yet I don’t think that’s what others mean by it. If you never felt like you had to go, but went—that’s my understanding of what the healthcare community means by incontinence.
Neurogenic bladder dysfunction is caused by loss of peripheral nerve function to the bladder, causing frequent / urgent urination usually coupled with incomplete emptying of the bladder and progressive bladder weakening over time. With SCA3, neuronal degeneration is in the cerebellum, though as years go by, the whole system degrades a bit.
I think it’s safe to say that everyone with SCA3 has or will have neurogenic bladder dysfunction. I don’t want to dismiss the many who say that they have urinary incontinence; years of neurogenic bladder dysfunction might lead to it.
The fact that many take oxybutynin for what they call incontinence proves that it’s not overflow incontinence, since oxybutynin would worsen overflow incontinence, as it relaxes the bladder. Still, incontinence seems to be the preferred term, even though it’s ambiguous and therefore unclear.
Here’s a smattering of medications people take, none of which make much sense:
- Flomax (tamsulosin). Presumably for men only. Alpha blocker that relaxes the prostate and bladder.
- Ditropan (oxybutynin). For overactive bladder, a possible symptom of neurogenic bladder dysfunction. It relaxes the bladder.
- Myrbetriq (mirabegron). For overactive bladder, a possible symptom of neurogenic bladder dysfunction. It relaxes the bladder.
Dizziness
Now we get into the realms where the whole rest of the world is, in fact, wrong, and though I was oblivious to this for decades, I do refuse to adopt incorrect usage.
For most of my life, I’ve had a single understanding of what dizziness is, which is the sensation of the stationary world spinning about oneself. This is essentially vertigo, though height need not play a part. As a kid, I played “pin the tail on the donkey,” as well as simply spun myself in place and as a young adult I have spun myself around in an office chair—until I could not walk straight—always voluntarily, and just for laughs. I have watched figure skaters and ballet dancers spin, passively knowing their main technique to avoid dizziness, and for decades of my life never questioned my understanding of what dizziness was.
For decades, I was asked by every doctor I went to if I experienced dizziness, and without hesitation, I always said no. I was answering honestly, and believed I was telling the truth, the whole truth, and nothing but the truth.
I was shocked to realize, in my fifth decade of life, that everyone, including doctors, usually means (or at least includes) extreme lightheadedness (presyncope) when they speak of dizziness. I’m a native speaker of English, and both the terms dizzy and lightheaded have been in my vocabulary for decades, meaning to me entirely different things. Never in my life have I experienced dizziness brought on by anything other than myself, explicitly and willingly. I have experienced lightheadedness hundreds of times, out of my control, though only as an extremely minor nuisance.
To make things even more wildly confusing, there are many with SCA who say that SCA causes them to be dizzy. The word dizzy to many means that they feel unsteady in any way, for any reason. This is so common, I don’t want to dismiss that some people could experience true dizziness (vertigo) due to SCA, though, for me, I absolutely, positively do not and do not ever expect to.
Leave a Reply