MS comorbidities make me a stranger in a strange body

UTIs and trigeminal neuralgia are among this columnist's numerous diagnoses

John Connor avatar

by John Connor |

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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?


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Jen avatar

Jen

John, there are plenty of reasons to take a probiotic but IBS may be another, if you're not already on one. A friend of mine, who doesn't have MS, said that a good probiotic was the thing that gave her confidence to leave home for the first time in months. We have access here in Australia to a good liquid one that has dozens if not hundreds of good bugs in it but the shipment costs would be prohibitive for you. Research might uncover a similar one in the UK.

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John Connor avatar

John Connor

Hi Jen Thanks 4 the suggestion. However kefir is the best source of probiotic bacteria that my research has led me to. It's also a lot cheaper. x

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John Connor avatar

John Connor

SOZ meant to drop this research in https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4626640/

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John Stillitz avatar

John Stillitz

Well played John. What a brilliant article. Says it like it is, warts and all with just the right touch of humour at the crucial moment.
Its just enough to show us whatever surprises our MS throw at us, with the right support, somehow we will cope.
Because everyone in our MS Club is so different, self diagnosis and self medication is so important

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John Connor avatar

John Connor

Ta mate.

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Nancy avatar

Nancy

I think that’s the worst part of MS, all those different bodily functions that are affected. We bounce around from one medication to another without being able to effectively treat the root cause. Bring on the day when research hits the jackpot and we can finally stop this disease in its tracks.
Nancy

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Wendy Roe Hovey avatar

Wendy Roe Hovey

You're back! With yet more news about your backside!!

Don'tcha hate being the man who makes the experts scratch their own heads (or other parts), then throw around the big words, then disagree with each other, and so on ad nauseum? What sane person would want to get cozy with a morbidity? And then there's the part where YOU have to educate THEM about your diagnosis...

I fear I'm ranting. The good part of all this, if there can be one, is that you educate, amuse and inspire so many people. Once again, thank you.

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John Connor avatar

John Connor

Nae problem x

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Pam K avatar

Pam K

Wendy-your comment about the part where YOU have to educate THEM about your diagnosis helped me remember a neurologist who said one day to me “I’m the neurologist, but You are the one with Your disease so let’s work together-I want to hear what you have to say.” He is one of my three favorite docs and because of moves and using military medicine for a time I have seen many neurologists.. I got the impression ms was not a favorite. I was diagnosed before MRI’s and drug treatments existed or, at least, were commonly used, The doctors had little to offer me so I was sort of a bad penny for them. At the very beginning, for 7 years I had a few infusions of ACTH and then shots of it 3xweek at home but that fell out of favor-they also used prednisone (which I had psychotic problems with so they eliminated that) By the time the other drug programs came in I was told my 20-30 year old disease was too far along for them and I just wasn’t offered them. I have had mri’s but, okay, there are lesions, so what? Pam K

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