Thursday, 15 January 2009

My MS History - Part Four

For the story so far see My MS History... Part One, Part Two and Part Three

I had a job interview in two days time. With a rare evening free of brain fog, I was sitting at home preparing a presentation for it. My wife, unable to take the wait, had earlier phoned my neurologist, Dr G, to press him for the results of my MRI. As I was staring at the Powerpoint 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 Dr S, 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. Dr G - 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.

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 Dr G 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 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 new to me. It all left me feeling very angry and very frustrated, on top of feeling crap anyway.

Dr G did three things for me: he prescribed steroids to relieve the symptoms (see Life with MS - part two(?)), he referred me to an MS specialist - Dr Sh - and most importantly, he made me determined to do my research, become an expert in my own MS and to build up a history so that I could make my case for treatment.

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 says that the earlier you can get on the drugs, the better the long-term outlook.

part 5 >

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