Multiple Sclerosis

MileStones (posted in August 2010)

2010 is a time of MileStones for me – anniversaries of significance in my journey as a person with MS.

It is 15 years this year since I developed a “migraine” which didn’t go away and became concentrated around my left eye, in which the vision gradually faded and dimmed.

It was a week or two before I was seen by an eye specialist, who diagnosed Optic Neuritis (ON) – inflammation of the optic nerve. It was a chance meeting with an ABA Board member at an AGM that same day that changed my life. As she was a GP, I casually mentioned the diagnosis and she was not quick enough to hide that concerned look you never want to see on a doctor’s face. “Have they spoken to you about MS?” she asked.

Uh, oh.

This was 1995, pre-Google, so I searched on Yahoo and could only find reference to ON in articles about MS! Trawling the library gave the same results.

At my follow up visit with the specialist, he was not pleased that I broached the subject and was quite dismissive. But that seed of awareness was planted. I was sent for a CT scan (MRIs not yet commonplace) as they wanted to rule out a brain tumour! (As did I, as this had been flagged back in the mid 80s as a possible cause of secondary infertility due to high prolactin levels – associated sometimes with tumours in the pituitary. But I finally conceived so that wasn’t pursued)

Twelve months later, the condition flared up once more, and during my visit, I glanced (with the good eye!) at my unattended notes and saw he had mentioned my knowledge about the MS link. But he still didn’t want to discuss the elephant in the room.

Six months later, I had another flare up and never bothered to see the eye specialist. Instead I got a referral to a neurologist and had my first (extremely expensive) private MRI, which was inconclusive.

Despite this lack of diagnosis, everything I was reading indicated there were not many other causes of ON and they had been ruled out in my case (I had not contracted a rare tropical disease – nor syphilis!) so I began to treat my health with suspicion until proved otherwise. I decided to become the healthiest person who might have MS and turned to diet, supplements and other lifestyle changes.

During this same time period, I had also returned to paid work, gradually increasing to full-time, with managerial responsibilities, a long commute, a busy family and care of my aging father. The whole machine was working toward my next MileStone.

In June 2000, a changed MRI (my third) following some numbness in the sole of my right foot, led to an official diagnosis of mild relapsing/remitting Multiple Sclerosis. While those around me were shocked by this (especially those who had thought it “all in her mind!”), I was actually delighted! After five years with a question-mark hanging over me, I now knew for sure what I was dealing with.

The fatigue associated with MS is relentless, incomprehensible to those without it and is not compatible with the lifestyle I was leading. In the first week of September 2000, as the Olympics commenced in Sydney, my world crashed around me. I slept for much of the following six weeks and was still unfit for work six weeks after that. I even struggled to find the energy to read!

I resigned from my perfect job as retail manager at the Shop in the head office of NMAA (now ABA) and found myself making great changes to manage my health – including commencing Betaferon treatment – administered by self injection every second day. My doctor’s certificate for my employer stated I was unlikely to be fit for full time work again!

So here I am, ten years down the track. Off the medication I endured for four years (I am in the minority who suffer ongoing, flu-like side affects), still managing my health with a view to being a very healthy old woman who happens to have MS, and working part-time running the first Breastfeeding Centre for ABA!

I still battle with fatigue – I am in bed 12 hours out of every 24 – and have to be careful how I expend my energy, however I wish I had a crystal ball ten years ago to let me know where I would be today.

( I have never had ON again and my vision restored 100% after the first two attacks, but struggled after the third and left a slight deficit. I have lived with occasional numbness, sensory disturbances, temporary loss of the sense of taste [actual, not stylish!] and most recently, spasticity in my leg. My consistent symptoms remain heat intolerance and fatigue. I continue my journey with a positive outlook)