Searching for answers in the medical wilderness
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Living with an invisible illness
“A little bit of physio is what you need.”
I first heard that well-intentioned statement four years ago when I visited my GP.
It felt like I had a trapped nerve in my left buttock that seemed to be causing weakness in my right leg. I had also just hit the age of 52 and the hormonal horrors associated with menopause had hit with a vengeance. Severe and relentless hot flushes accompanied by fatigue was bad enough without having to contend with a wonky leg and a pain in my arse.
At that stage it was hindering my ability to do certain things and I was determined to get to the bottom of it.
I was living and working in Australia at the time and after rather a lot of physio over the course of the following year, the problem was worsening rather than improving.
I saw chiropractors, Bowen therapists, acupuncturists and masseuses. I had an MRI of my lower lumbar spine, a cortisone injection, two x-rays, a nerve conduction study, and an ultra-sound. The problem had everyone scratching their heads and some I’m sure thought I was in the grip of some imaginary menopausal fantasy.
By mid-2013 it had 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. I decided to leave Australia and return to New Zealand while I was still physically and financially able to to do so. I was fast becoming in danger of spending everything I owned on medical bills .
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.
In mid-2015 my doctor gave me a referral to a neurosurgeon who ordered yet another MRI which revealed that I had a spinal condition known as spondylolisthesis. At last I could put a name to my mystery condition and the good news for me was that it could be remedied with surgery! I couldn’t get it done fast enough. Hopeful 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.
By this time I was starting to suspect that the problem might be psychosomatic. Perhaps menopause had triggered 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.
Claire Brown leaves the Burwood Brain Injury Rehabilitation Service after spending three weeks there.
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! My local doctor advised me to go to the 24 hour surgery for an x-ray of my foot and to get some crutches as I was finding walking exceptionally difficult. Also if I put too much weight on the foot I would get this alarming 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. He didn’t seem to think that the electric shock sensation was anything to worry about and I was advised to go home, take a couple of Panadol and predictably … get a little bit of physio. By this time I was in so much distress I was uncharacteristically in tears. Thankfully the receptionist/nurse at the counter saw my distress and organised some crutches for me but I went home feeling like something of a drama queen.
After that nasty little episode things got progressively worse. I went to my local doctor and was prescribed anti-inflammatories which unfortunately gave me horrendous stomach cramps. I then started to go numb around my midriff which affected my ability to empty my bladder and bowel. 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 lumbar spine this time, but of my entire spine and brain.
Tripping over Weasley the cat triggered a chain of events that solved the mystery once and for all, says Claire.
The following day I was visited by the neurologist at the hospital and 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 didn’t have to go on battling some phantom disorder silently on my own. I wasn’t going mad. There is help available - people who actually understand what I am experiencing.
I was discharged from Christchurch Hospital and transferred to the Burwood Brain Injury Rehabilitation Service. 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 later and have been home for for six weeks now. I am still getting used to being surrounded by mobility aids but thankfully some of the symptoms are easing a little and I’m feeling a lot more confident.
I’m at the beginning of a new journey now which is going to have its challenges as I learn how to live with this condition but at least I’m not still searching for answers in the wilderness and being told that all I need is a little bit of physio.
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