MS: My Invisible Journey

My ‘invisible’ journey began four years ago.  It was the beginning of a baffling, frustrating and extremely expensive period of my life that became increasingly dominated by a mysterious health issue.   I had previously been extremely fortunate with my health and had hardly even suffered so much as a cold.  That is until I turned 53 and hit menopause which is when the problems began.  Severe and regular hot flushes and overwhelming tiredness were bad enough but I had also developed a peculiar problem which seemed to emanate from a trapped nerve in my left buttock causing weakness in my right leg.  It got to a stage where walking was becoming an increasing effort and other muscles that were compensating for the weakness became over-strained and sore.  Although I was still functioning reasonably normally and holding down a responsible full-time job, most of the time I felt exhausted, disorientated and totally out of alignment, both physically and mentally.

I was living in Australia at the time and, determined to get to the bottom of the problem, I visited a host of medical professionals most of whom were every bit as mystified as I was.  Some I’m sure thought I was just experiencing some imaginary menopausal fantasy and that I was making the whole thing up, although why I’d want to do this I have no idea.  I had an MRI scan, a cortisone injection, two x-rays, a nerve conduction study, and an ultra-sound.  Apart from ‘normal degeneration for my age’ everything appeared to be in good working order … except my bank account.

By mid-2013 I decided to leave Australia and return to New Zealand while I was still physically able to go through the drama of packing everything up and shipping it back to New Zealand … and while I could still afford it as I was fast becoming in danger of spending everything I owned on medical bills and ineffectual remedies.  Once back in New Zealand, I had another MRI scan of my lower spine which revealed nothing more startling than the one I’d had in Australia so I became stuck yet again in a fruitless round of physiotherapy sessions, chiropractic manipulations and the like.  Friends and family understood that I had some sort of undiagnosed back problem, but for most people meeting me for the first time the only clue that there might be something wrong was a slight limp and the fact that I very occasionally used a stick if I had to do a lot of walking.

Inside though, I felt ghastly.  The leg weakness was still bothersome and although I wasn’t in a huge amount of pain, I’d get a lot of cramps and pins and needles.  Plus I would often become overwhelmed by an uncontrollable urge to fall asleep at the most inconvenient times but I just assumed that this was simply part of the whole nightmare associated with the dreaded menopause.

Life ticked on pretty much as usual until mid-2015 when my doctor gave me a referral to a neuro-surgeon who ordered yet another MRI which revealed that I had a condition known as spondylolisthesis.  At last I had a diagnosis and the good news for me was that it could be remedied with surgery!  I couldn’t get it done fast enough.  Filled with hope that I was finally going to get some relief from my symptoms I underwent four hours of surgery which incorporated a spinal fusion, laminectomy and a decompression.  I waited in hopeful expectation for nearly a year afterwards but eventually had to conclude that the surgery had done absolutely nothing.   My symptoms were neither relieved nor worsened by the surgery and whilst I don’t doubt the existence of the condition that was diagnosed, I was firmly back at square one.

By this time I was starting to suspect that the problem might be psychosomatic.  I’m (thankfully) not prone to depression but thought that perhaps menopause might have caused some sort of mental imbalance that could have thrown up some past issues from my subconscious that might be contributing to my symptoms.  Figuring it couldn’t do any harm to at least investigate the possibility, off I went to counselling.  I was into my second session when something happened that triggered a chain of events that solved the mystery once and for all.

I decided to get a kitten.  My old cat had passed away and someone I knew was giving away this cute little ball of orange fluff and I couldn’t resist.  He was so affectionate that he followed me everywhere and one morning when I was getting ready for work he managed to trip me up (which wasn’t difficult as I was going through a particularly bad patch with my weak leg).  I didn’t actually fall over but landed very heavily on my left foot.  It was as though a bolt of electricity had shot through my foot up to my waist and it hurt like hell!  On the advice of my local doctor I ended up at the 24 hour surgery for an x-ray of my foot and to get some crutches as I was finding walking exceptionally difficult.  If I put too much weight on the foot I would get the electric shock sensation.

The young doctor who examined me after the x-ray was less than helpful as the results showed there were no broken bones and he didn’t seem to think that the electric shock sensation was anything to worry about.  We talked about pain relief and I explained about the spinal operation and said that I’d received some Tramadol after the surgery along with a virtual lifetime supply of Panadol.  He brushed the Tramadol off as being a total overkill and said I should do something about my peculiar gait (no shit Sherlock).  Why not get some physio?  (What a novel idea- why didn’t I think of that?)  He then attempted to trip me up (figuratively speaking) about which leg was weak and which foot was hurting as though I had somehow got my story wrong.  Clearly he thought I had absolutely nothing better to do with my day than to visit the after-hours surgery and waste everyone’s time, including my own.  If I had been feeling better I might have been in a position to stand up for myself but by the time I got to reception to pay the bill I was in so much distress I was uncharacteristically in tears.  I could scarcely walk, had no crutches and wasn’t signed off for ACC.  Thankfully the receptionist/nurse at the counter saw my distress and organised some crutches whilst the young doctor I’d seen rushed out and gave me a prescription for Panadol.  This to my mind was clear evidence that he hadn’t listened to a word I’d said.

After that nasty little episode things got progressively worse and I ended up having nearly two weeks off work which seemed odd given that the cat tripping thing was a relatively small incident.  I went to my local doctor and was prescribed anti-inflammatories.  Unfortunately these gave me horrendous stomach cramps and then I started to go numb around my midriff which affected my ability to empty my bladder and bowel.  Although I thankfully hadn’t become incontinent, I literally had no sensation of when I needed to use the toilet.  On the day my legs gave way completely, my daughter was at home with me and she called an ambulance.  I was taken to public hospital and given an MRI, not just of my lower lumber spine this time, but of my entire spine and brain.

The following day I was told that I have Multiple Sclerosis.  I was neither surprised nor distressed by this news.   I was relieved.  It explained so much of what I had been through for the previous four years and there was relief in the knowledge that I was finally taling to people who actually understood what I was experiencing.  It wasn’t in my mind.  I didn’t need to ‘just get a bit of physio’ or ‘take a couple of Panadol’.

I was discharged from Christchurch Public Hospital and transferred to the Burwood Brain Injury Rehabilitation Service at the beginning of last month.  The doctors, nurses, occupational therapists and physiotherapy team there are absolutely amazing, as are the newly built facilities.  I feel very fortunate to live in a country where services like this one are available when you really need it.  I was discharged three weeks ago and am home now.  Although I’m not independently mobile and am still getting used to being surrounded by mobility aids, some of the symptoms are easing a little and I’m feeling a lot more confident.  I’m extremely fortunate to be surrounded by a caring community and to now have an understanding employer enabling me to return to a work situation that accommodates my condition and for this I am so grateful.

The invisible nightmare is over and at least I can put a name to it now, if not for my own understanding but for others.  I’m at the beginning of a new journey now and I have no idea what is in store but I know this much, it’s going to be very different.



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