My MS journey begins, 24 years before diagnosis

My MS journey begins, 24 years before diagnosis

Cascading water in Iceland

Some events are very significant, and the emotional impact is unforgettable. Think of marriage, death of a spouse or parent. I will never forget that moment in 1996 when the consultant uttered the words “You have multiple sclerosis”. Many years later I realised my MS journey started 24 years before my diagnosis.

My MS journey starts

I was in a pub on a hot summer’s day in 1972 with a couple of friends. I was taking the first sip of my second pint of Hook Norton ale when everything changed in the blink of an eye. Suddenly I had a desperate urge to get to the loo in double quick time.

“I need to have a pee now” was all I could thinks about.

There was no gentle sensation telling me that at some point in the foreseeable future that I ought to go to the gents.

Instead my brain was shouting ‘GET TO THE LOO, NOW!’. A non negotiable sensation.

I rushed into the loo.

Quickly undid the button of my jeans and yanked down the zip. Just in time I pulled out my willy from inside my pants. PHEW.

Now I stood stood to have a wee but the sensation of needing a pee had flown out of the window. Not even a few drops could I pee, so totally disappointing.

I stood there totally mystified and confused.

I did not understand what had happened.

Was this a part of growing up or just one of life’s little mysteries? I thought no more about it.

Awkward moment

I remember going back into the bar. My friends telling me that I could not possibly have been away long enough to have a pee. I probably made some off-the-cuff joke and forgot about the event for a very long time. That is probably the first time that the multiple sclerosis gremlin made its presence felt. It completely disappeared only to return in trumps a few years later but that is another story.

Now what should I do?

If I had seen a doctor the next day and suggested that something was amiss, would he have considered further investigation? I suspect the doctor, like me, would have dismissed the matter as a one-off incident and added there is no need for me to worry. Would that happen today?

Back in 1972

I was only a teenager; not old enough to drink anything alcoholic in a pub and far too self-conscious to talk to anyone about the recent incident. I convinced myself it was nothing to serious. That day in 1972 really was the start of my MS journey.

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November 2021

4 responses to “My MS journey begins, 24 years before diagnosis”

  1. Mal Kiely says:

    Thank you. That’s a great way to share the start of your MS Journey. I continue to work mine thru!
    https://team-gherkin.blogspot.com/2017/01/my-ms-journey.html

  2. Alison B says:

    Thanks for sharing this.

    I was originally diagnosed with Transverse Myelitis and after my MS diagnosis in 2015, I found it impossible not to look further back for the ‘real’ start date. I suspect it started for me more than 20 years ago when I developed a cough that was unresponsive to treatment. The cough is so aggressive I developed nerve pain spasms in my ribs. Years later I had a bad shingles attack in the same area as the cough linked nerve pain. Then when I had MRIs to diagnose the MS, one of the lesions was at T12 – the same place as the cough driven nerve pain and site of the shingles attack.

    I’m 61 now and no longer working, but for most of my career I worked in stressful jobs and was well aware of the toll on my mental health. But with hindsight I believe the cough and shingles were physical signals from my brain saying things were not okay. I spent about the first five years after my diagnosis in denial, but eventually realised the only thing that was actually in my control was how I lived each day. In some ways I am still repeating my work behaviours in that I spend quite a lot of time researching how I can do the things I want to do i.e. problem solving, fire fighting a crisis, looking for workarounds, etc.

    I’m okay with this at the moment. I do have bladder and bowel problems, but luckily these are generally manageable. When I was first discharged from hospital, I just told my family and friends I now had bladder and bowel problems and apart from my Mum (of course!), nobody has ever asked me for more details LOL!

    • Hello Alison,

      Transverse Myelitis and MS are often connected but never heard of a connection to shingles which I believe can only happen after chickenpox. Also stress and MS are uncomfortable bed fellows, I think stress is caused because of difficulty in coming to a decision and the later is a cognitive problem common in MS and this causes stress.

      Many people with MS can be in denial, I was there for a few years. MS is a very fickle disease and people invariably see only the visible disabilities. Only those in the know appreciate that MS will often affect the bladder and sometimes the bowel. Life with MS is a merry go round of looking for work arounds.

      Good luck with keeping it a secret, much harder with visible disabilities, ones that cause your behaviour to change.

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