Special snowflakes

I’m going in the morning (um, in about seven hours actually) for my all-day neuropsych exam to evaluate my cognitive functioning. To say this test is high stakes is putting it mildly.

If it shows that my brain function is really bad, that greatly increases the odds that I could win my disability case even on the first appeal. If it shows that I’m only mildly impaired, the road to disability will be a much bigger fight (and the more likely I am to lapse back into denial and believe I could work full-time.)

I admit that I’m curious about what it will find as well. I don’t really know how to gauge how well I’m doing.

Sometimes I feel like I’m about 80 percent normal, especially when I’m well-rested and not under any stress.

Other times, I feel like my brain is melting in on itself and I’m not sure if I’ll wake up the next morning.

That’s kind of a very weird limbo. And the latter, being afraid that I might not wake up, is also really terrifying.

What I do know is that my degree of consciousness doesn’t even feel the same as it did five years ago. I never feel fully alert anymore, which has nothing to do with amount of sleep. I’m just not completely aware of everything that’s going on around me. It’s like there’s a heavy curtain that’s hanging down, covering over things I used to be able to see and to think about. Like there are things happening on the periphery that I just can’t see.

But I’m also realizing that part of why I was so reluctant to take the MS drugs is not just because I was scared of them: it’s that I wasn’t fully convinced I had MS. That’s not denial speaking, either.

It’s that there were and are too many things that don’t add up.

For one, none of the interpreting radiologists’ notes on the MRIs I’ve had ever came back as being described as indicating MS. Not one. I’ve had at least six MRIs. Not a single one said MS. They said “extensive signal abnormality”, extensive white matter loss, signs of possible tiny infarcts (aka strokes.)

My brain doesn’t have randomly scattered lesions; it has large symmetrical patches of white matter loss. All of my MRIs say it could indicate vascular disease, some other demyelinating disease, or even a super rare genetic disease like CADASIL (for which I’ve had the gene sequencing test and I don’t have it.)

I have no lesions on my spinal cord. Nothing visible in my eyes, either, according to vision exams that were specifically looking for that. These two facts alone mean I don’t meet the MS Society criteria for an MS diagnosis.

It complicates things somewhat that in my last relapse, I had the oligoclonal bands in my spinal fluid. That’s usually an indicator for MS. But I found out today that it can occur in other things as well, MS is just the most common.

I still think I have something other than MS. I will still take the disease-modifying drugs (if my neurologist ever gets back to me) but I’m just not convinced that that’s actually wrong with me.

My MRI results show it could be small strokes. My last relapse was completely indistinguishable from a stroke, even after all the tests they did. I had the full weakness and drooping on one side of my body.

If it’s vascular dementia, there’s not anything they can do to reverse the damage I’ve already had. But if that’s what I actually have, the disease-modifying drugs won’t do anything. And ironically, the best odds of saving my life would be a super-strict diet and regular, fairly intense exercise.

There’s still the possibility that it could be a variant of adult-onset leukodystrophy as well. One of my neurologists in Michigan (who has now passed away) believed that was what I had. I had some 24-hour urine test looking for leukodystrophy; I was positive for one out of the eight markers. It’s not normal to be positive for any. But I also wasn’t positive for enough of them to get an official leukodystrophy diagnosis either.

The thing is that there’s a lot that the medical community still doesn’t understand about leukodystrophy, especially with adult onset. There’s a lot they don’t understand about MS, too, and it often becomes a catch-all diagnosis. Like “we can see on MRI that you have brain lesions and you have these symptoms, so we’ll call it MS.”

But my MRI looks so unlike any MRI for a person with MS. I don’t have the typical “Dawson fingers” pattern on my MRI usually seen in MS. As mentioned above, I have no lesions on my spinal cord or optic nerves. My MRI is almost completely unchanged over the past six years since I was first diagnosed, even though I’m getting sicker.

My symptoms could also be anything from adult-onset leukodystrophy to early-onset vascular dementia, even to dementia with Lewy bodies (what Robin Williams was diagnosed with before he took his life.)

It’s not that I think I’m a special snowflake or that I don’t want this to be MS. I’ve already grasped that there’s not likely to be a cure and I’ll probably never get back to the level of functioning I had even five years ago. In a way, I wish this was MS.

I’m not just grasping at straws, wanting this to be something much more rare than MS. It’s that none of my MRIs say MS, either. I don’t fit the pattern.

I’m having another MRI Monday, so I guess I’ll know more after that. (Maybe.)

But I’m not sure I’ll ever know the answer either way. And the ever-curious person within me is not happy with that. I’d like to solve the mystery of what exactly I have.

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