My Diagnosis by Julia Hart

For World MS Day by Julia Hart 12.4.24 

 MY MS DIAGNOSIS Navigating MS Together

 I had been diagnosed with MS by Prof Michael Hutchinson in 1999. Things had been going wrong with my body for a good ten years, without anyone using the term Multiple Sclerosis. I had seen a neurologist in St James Hospital, I had been to the London Clinic while over to visit my mother. Not one person used the term MS. To me, that is. Years passed, with spells on steroids, spells with no symptoms, and then a period came when I could hardly lift either leg to put on knickers, socks or trousers or shoes. Plainly I had to have these difficulties investigated. 

The doctor I had been seeing intermittently in Dublin retired, but before he did so he referred me to Prof. Hutchinson. A phone call secured me an appointment with him and somehow I managed to drive from Avoca to the private wing of SVUH, accompanied by my non-driving husband. We both sat in Prof Hutchinson's room. He opened my file. 

“Ah, MS!” 

“Is that what it is?” 

“I'm sorry, I thought you knew.” 

I didn't, although at 6.15 on waking one morning I said out loud in my bedroom, “Oh God, you have MS!” Why I have no idea and I forgot those words, at least for about ten years. And so, sitting in Prof Hutchinson's consulting room he said “I'll take you in on Sunday and we'll do an MRI on Monday plus a few other tests.” The receptionist booked me in and in a daze I left the consulting room for the carpark, my husband trailing in my wake. 

Once home I sat on the floor and wept.

“I should have told you. I thought it best not to.” I wept all the harder. Just like his family: don't mention illness!

There followed the need to tell my five children, in their late teens and twenties fortunately. They reacted differently; tears, appalled facial expressions, hugs ad kisses. After a few weeks during which emotions settled somewhat, I received an invitation from the MS Society, whom I had recently joined. A weekend for the newly diagnosed was being held in the Glendalough Hotel and would I like to go to it. Yes, I would, so I sent off the completed form and a cheque and on the appointed day I arrived at the hotel and was signed in. 

There followed three days of talks about how we should cope with the news we had all just received. Each of us reacted in different ways; each of us had different symptoms; many of us had never met anyone with MS before. During pauses between talks and meals we gathered in groups and discussed how we were feeling, what our symptoms were and how life had changed for us. For some there was familial support, for others abandonment by spouses: that seemed the hardest to bear. We had some exercise classes, advice was given on how to adjust to our new situations, some booklets were handed out; names and addresses exchanged, new friendships formed; promises to keep in touch made. 

It was some years later, by then I was a widow, that I started to come to the marvelous MSCC; I also joined the Greystones Scribblers group, then called the Writers' Workshop, and which I have been involved in for the last fifteen years and which I love. Once it was a face -to -face meeting in Greystones, now, since Covid, it is a Zoom meeting every fortnight. Any new members welcome!