All aboard the medical mystery tour…again

I got my results back from a recent MRI. The results were very good: I didn’t have any new lesions and my disease hasn’t progressed in 3 years.

But the interesting thing is that I am back aboard the medical mystery tour again, awaiting a true diagnosis. The MRI report said I have a demyelinating disease but didn’t mention MS. Think of myelin as the coating on a wire, only your nerves are the wires and the coating is being stripped off—that’s demyelination. It means that signals don’t move as quickly through your brain.

The MRI report suggested CADASIL as one of the possible diagnoses to investigate. CADASIL is a very rare brain disease caused by a notch on a gene. Like MS, it tends to be progressive and also unpredictable. Some people might go from walking to completely unable to care for themselves in a year, whereas others may be relatively unaffected for the rest of their lives.

But the problem with this is that I was already tested for CADASIL a couple of years ago. I tested negative. This means that if I start the merry-go-round of seeking a diagnosis again, it will cost a lot of money and will probably present me with yet more dead ends.

So we know that I don’t have MS, which is great news. It leads me to believe that my gut instincts not to take any of the terrifying disease-modifying drugs were correct and I avoided serious, potentially-fatal side effects.

The question now is: how far do I want to go in pursuit of an accurate diagnosis for once? I’m not really sure there’s much point in it, really. If it’s a rare brain disease, there’s no treatment or cure either way.

I know how it affects me and I know what triggers worse symptoms (namely, stress and lack of sleep.) I’m kind of assuming that I have another variation on a similar gene as CADASIL that maybe hasn’t been discovered yet.

My mental state is generally pretty positive. So maybe I could just live out the rest of my life knowing that I need to avoid stress and get enough sleep. Take more naps than the average person. Maybe I can’t kick ass as hard as I want to, and I definitely don’t seem well-suited to traditional full-time jobs. But I’m still working on finding my own independent business ventures that might allow me to live on my own terms and maybe one of them will pan out.

If nothing else, I’m adaptable. Maybe this is just an additional challenge I’m facing but it doesn’t make anything impossible. I just have to believe that I’ll continue staying healthy and well.

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