I had a job interview in two days time. With a rare evening free of what I called brain fog, I was sitting at home preparing a presentation for it. My wife, unable to take the wait, had earlier phoned my neurologist to press him for the results of my MRI. As I was staring at my notes he phoned me back.
“I have the results of your MRI scan… It shows some inflammation in the white matter of your brain and spinal cord…”
Here comes the bit where they let you break the news to yourself:
“When you saw my colleague, did she give you any indication what it might be?”
“Yes, she said there was the possibility that it could be MS.”
Quick as a flash: “Yes! It certainly looks that way.”
“Oh! – OK!”
So there you had it. It was MS. The consultant – not an MS specialist by his own admission – thought it was nothing to worry unduly about. He told me that there were “only eight to ten large lesions” (only??) visible in the scan and more in the way of tiny “insignificant” ones. I now know that one lesion in a crucial spot can be more debilitating than several lesions spread all over the place. This, he thought, looked like a case of benign MS and that I would be very unlucky if I didn’t go into remission and then get no further flare ups for years. Indeed some people can go for 20 years without a relapse, he told me.
Sighing, he didn’t think it worth me coming to see him at the appointed time the following week, but then conceded that I might have “some questions.” So the appointment remained.
I took the rest of the evening off from job interview preparations.
The following day at work, I broke the news to my workmates.
I had no quandary telling them as I had good working relations with virtually everyone. I have since found that talking about MS can sometimes be the best therapy. It can be an invisible illness, so a bit of awareness raising doesn’t go amiss, sometimes. I figured that it was probably better to be open about any problems I might be having in case I had a bad day, like the day where I had all but fallen asleep at my desk.
Everyone was very understanding and asked intelligent questions. All except my boss who pronounced that she knew someone with MS and that even when he lost the ability to walk it hadn’t changed his life much because (to the whole office, rather than me) “they got him a little buggy!”
I made a mental note that should I get a little buggy of my own, she would top a hit list of people I wanted to hunt down and run over.
I met the consultant a week later. I won’t go into the details of the meeting, except to say that he was uninterested and unengaged. The information he gave me was wrong. Things that I suggested were symptomatic of MS, like my optic neuritis four years previously, he disagreed with. He also said the mood swings I had been experiencing were me and nothing to do with MS.
He sent me and my GP a strange letter where he obviously hadn’t listened to a word I had said and pronounced that my symptoms were getting better and clearing up, which was news to me. It all left me feeling very angry and very frustrated, on top of feeling lousy anyway.
I did get three positive things out of my meeting, though: he prescribed steroids to kick-start the recovery and relieve the symptoms, he referred me to another consultant neurologist (an MS specialist) and most importantly, he made me determined to do my own research, to become an expert in my own MS and to build up a history so that I could stand up for myself and make my case for treatment.
One of the criteria for getting disease modifying drugs in the UK is that you need to have two relapses within two years before they will prescribe anything. All the research seemed to say that the earlier you can get on the disease modifying drugs, the better the long-term outlook.