I’m kind of riffing on an old Steve Miller Band song I didn’t particularly like, that says something like “time keeps on slipping into the future.”
Only it’s my mind that’s slipping, and what it’s doing is actually terrifying. I really wish I wasn’t without medical insurance because I should be getting myself into a neurologist and seeing if they can find out what’s happening to me. Of course, there are other variables included, like whether I could afford the recommended treatments, which I couldn’t even when I did have insurance. This is not a good disease to have with crappy insurance and limited income.
I’ve noticed that ever since I had my short-lived full-time job earlier this year, my brain doesn’t quickly bounce back anymore. I’ve had to cut jobs, responsibilities, even people completely out of my life because they overwhelmed what my brain could process. But I fear that it’s getting worse.
Lately, I’ve been trying to watch a lot of anime TV shows with my husband, shows that he and my sons like and want me to like. And what I’ve noticed is that so far, with three out of three that he’s introduced me to, I can’t follow them at all. By the end of an episode, I can only tell you a couple details about what happened.
On the one hand, there are a couple factors at play that aren’t necessarily a sign that my brain is getting worse. One is that the shows are fairly complicated; they often jump in at the middle and then reveal more about the story or characters through flashbacks. But during that time, I’m wondering who these people are and I can’t keep track of many of them.
Another is that all of them have extensive rapid fighting or combat sequences. For one thing, that’s a genre I’ve never really gotten into or enjoyed. I’ve long had the unforgivably uncool trait of not being that interested in Star Wars because so much of the movies are prolonged battle sequences. I’ve never had an easy time following battles or frankly being interested enough in them. When my brain was at 100 percent, I still found battle scenes pretty uninteresting to watch.
But I can’t blame it all on genre, how the characters are introduced, or the order in which the story is told. To be completely honest, the first time I remember feeling totally lost and unable to follow a show was when my husband was watching Game of Thrones in its first seasons. I was incredibly overwhelmed by the number of characters in that show and couldn’t keep them straight.
That would have been back in about 2011, two years before I was diagnosed with MS. At the time, I thought it was just a complicated and confusing show. But now I’m wondering if my extensive confusion in relation to that show was actually a sign that my brain was already having trouble.
Keeping track of a lot of complicated storylines or being introduced to multiple characters at once requires short-term or working memory, both of which I’ve been diagnosed as having problems with. If I only see one character for five minutes and then not again until several episodes later, I may not remember them. Or the details I do recall might be really vague.
Another possibility my husband mentioned is that the anime shows could be producing seizure-type reactions in my brain. I know there was a highly publicized thing with Pokémon producing that reaction in some Japanese viewers a few years ago so it was never shown in the U.S.
Seizures aren’t necessarily common in MS; I’ve looked it up. But they can happen and my neurologist has diagnosed me with a type of seizures called myoclonic. These myoclonic seizures are just spontaneous muscle jerks, usually affecting my legs or my arms. These types of seizures are not necessarily associated with epilepsy. However, people who have myoclonic seizures are more likely to have other additional types of seizures as well.
From what I’ve researched, though, I could be having complex partial seizures. Apparently, situations of high anxiety can precede complex partial seizures. Interestingly, neck pain is associated with complex partial seizures as well, and I frequently deal with that too. I thought it was just because I have degenerated discs in my neck, but what if all along I was also having undiagnosed seizures?
Obviously, I’d need to see a neurologist to see if that diagnosis fits and get on anticonvulsant medication. (I’m already taking a medication to stop the myoclonic seizures in my legs, but it’s a sub therapeutic dose for more serious seizures.)
Because I know I have extensive white matter loss, that also puts me at high risk of having strokes. I don’t know if the reactions are mini strokes or if my brain is having something like an absence seizure. When my friend would upset me, I would have very extreme shaking all over my entire body, which seemed almost like a typical seizure.
But when I’m watching a show that’s too hard to follow — especially if it has flashing lights or really fast combat motions — my brain shuts down. I can’t follow anything at all and it’s almost like I’m not even there. My brain just checks out for a bit. But because I can tell that it’s happening and I don’t know why, it also causes a very panicked reaction. I feel very disoriented and even scared. My heart starts to beat faster and it takes several minutes for my brain and body to return to normal.
All of this is why I’m scared about my brain in general, because it doesn’t fit with anything else I’ve read about MS. I know MS is a very weird disease and I’ve read in many places that no two cases of MS are exactly the same.
I do have the very typical MS symptoms of getting extremely tired easily, having leg spasms, being in pain all over, occasional blurred vision, poor balance, vertigo. In the past couple months, I have started getting some new symptoms that scare me a lot like having difficulty eating certain foods and inhaling or choking on some things (such as corn kernels or ice.) I probably seriously need medical help, including physical and occupational therapy, so I can minimize the choking and aspiration risks.
But the brain thing is weird. And it has seemed to come on so suddenly in the past several months that it really scares me. Doctors aren’t totally sure about my diagnosis; they call it MS because I have both lesions on my brain and the telltale signs in my spinal fluid.
Yet the MRI of my brain does not look like any MRI of a person with MS that I’ve ever seen. It’s either some other brain disease that they can’t diagnose or extremely advanced MS. Both of the last two neurologists I saw here went with the latter, describing me as having “aggressive MS.”
But that too is confusing and unclear: the sign of stable MS is no new lesions, and I haven’t had any new lesions since my first MRI that diagnosed me in 2013. It doesn’t seem like it can be called aggressive MS when, on the MRI, it’s barely changing at all.
Still, even though my MRI looks nearly unchanged, my symptoms continue to get worse. And nobody knows what to do about that (except possibly the experimental IVIG treatment I couldn’t afford to get.) Since the disease-modifying drugs are deemed successful if your MRI doesn’t show new lesions, I’m already good by that definition.
And yet, I’m actually not good, no matter what the MRI says.
Granted, I haven’t had an MRI since I was hospitalized about 16 months ago. If I had decent health insurance and didn’t have to pay for an MRI out of pocket, I probably need one now to find out what’s happening to me.
I have no insurance as of Monday, so unless I go into the ER over the weekend and am given one, I’ll have no way of knowing what’s happening to my brain for at least several more months. That feels like a recklessly kamikaze approach considering what I’m dealing with.
But since I can’t afford the recommended treatments anyway, I am not sure it’s too useful to even know what’s happening.
Still, I feel like I’m getting worse so fast. What if it’s a brain tumor or something similarly fatal?
On the other hand, what if it’s just normal short-term memory loss associated with both MS and depression, and I just can’t handle complicated shows or people who stress me out? Maybe what I’m experiencing is completely normal given my conditions and I just need to accept them and adapt. Cognitive changes are a normal thing in MS, but this feels extreme. I need relatively simple things, un-busy places, quiet, few distractions. Any more than that and I get quickly overloaded.
I just wish I could stop feeling so afraid of the unknown and how quickly it feels like I’m getting worse.