Hindsight

My first big relapse was in 2004 with a numb face, a headache that wouldn’t shift, optic neuritis and vertigo.

It’s strange to think of it now, but the medical profession couldn’t explain the cause at the time. Probably because I presented the symptoms individually, rather than all in one go.

I then experienced a few more symptoms in the following few years that tied in with the diagnosis of my MS in 2008. This was when I had the mother of all relapses that left me with the doublevision I have today.

Because of the missed diagnosis, I’ve often wondered when the start of my MS really was. Until recently I believed it was 2004.

Now I’m not so sure I can put a date on it.

In the late eighties, for instance, I had some very dodgy visual symptoms that tie in with optic neuritis and Uhthoff’s phenomena as they followed midsummer cross country runs.

Then I remember there’s a bit of a gap between 1987 and 2004. Seventeen years with no symptoms at all…

…but last night I found some evidence to the contrary.

If you ask my wife, she’ll verify that I’m a bit of a hoarder (I prefer the term self-archivist). I was sorting through some old papers in my loft last night. Among them were some old pay slips, timesheets and sickness forms from when I lived in London. It was in the sickness forms that I discovered a referral to my then occupational health department in 1998.

The reason? Doublevision!

This, of course, is the very symptom that returned ten years later to make me seek serious medical advice.

Not just doublevision though, eye pain too, which sounds like a dash of optic neuritis thrown in to me.

I only have vague memories of all this, as this happened fifteen years ago. I seem to remember a workplace assessment giving the reason as eye strain, which explains why I didn’t pursue the 2004 wierdness when that’s how it was explained to me again.

It does lend some creedence to the idea that my MS is a lot older than I, or my doctors realise. It effectively expands the timeline by six years.

My mission, now, is to find further evidence. To see if I can fill in the gaps between 1987 and 1998. I kept a diary on and off in the late eighties and early nineties, and I have a box of old letters, so I’ll be interested to see if that brings anything to light.

I have a few unexplained medical issues that are still a bit vague in my memory from that time, so I suspect it might provide a few enlightnening memories.

It won’t change anything, of course. It won’t change my current situation and it won’t inform my treatment. One thing it will do though, is satisfy my curiosity.

It will have contributed largely to the person I am today.

My MS History – Part Four

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.