MS comorbidities make me a stranger in a strange body

I was never a hypochondriac until multiple sclerosis (MS) whacked me. A catastrophic fall while playing tennis in 2007 resulted in a shoulder separation that took two operations to fix. The pain was so bad that, at the time, MS was just something else I had.

To be accurate, the fall was caused by a singular sclerosis — clinically isolated syndrome (CIS). The successful second operation in 2009 happened just in time for me to be diagnosed with the disease that I’d already worked out I had. My slim chance of CIS not advancing into MS was gone.

Today, I’ve accepted that I’m pretty good at working out my own “MS-inspired” illnesses — or, as they’re referred to in medical speak, comorbidities. So far, I’ve always been able to tell when I’ve got a urinary tract infection (UTI), though I have catastrophically failed twice to notice how serious the attacks had become. Both landed me in the hospital in the past six months.

Research into recurring UTIs led me to the LUTS (lower urinary tract symptoms) clinic at Whittington Health NHS Trust. I’d finally found doctors who fully accepted that long-term UTIs exist! At the time, they were working outside National Health Service (NHS) guidelines, though that finally changed last year. However, sotto voce whispers indicate that such a radical change is still hard going.

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Trigeminal neuralgia was much easier to find — one Google search and it turned up. This was apposite, as the pain felt like someone was kicking my teeth in. Someone was; it just happened to be me. Well, my MS. However, getting the antidepressant fluoxetine prescribed to alleviate my pain took the sort of deep-dive research that you need to breathe helium for.

My list of such self-diagnoses goes on into tedium. If you’ve tarried this far, you amaze me. Will your columnist finally make things lively? Let’s see.

For the past six months, I’ve been plagued by — and there’s no delicate way of putting this — diarrhea. I’ve probably lost a few of the more delicate readers, as my descriptions have been pretty graphic. As with my jokes invoking action painters, they may well have thought it was just a load of Pollocks.

So it was with some consternation that I learned that 20% of people with MS experience symptoms of irritable bowel syndrome (IBS). I presently sit on a bot-bot that’s been mostly behaving itself. IBS doesn’t have a cure, anyway, and it’s really damned inconvenient if you can’t actually use, well, a convenience.

The over-the-counter drug loperamide helps me control outbreaks. But I’m hoping that my issues are merely a result of my microbiome having been stripped bare twice by the strong antibiotics I was given for my hospitalizing UTIs. In which case, I’m also drinking lashings of the probiotic drink kefir to help it recover.

I know my MS is incredibly aggressive, but must I suffer from so many comorbidities?

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