These feet were made for walking

In addition to the continence advice, my neurologist also sent me for another MRI scan. This was completed in Sept 2009, nine months after my original scan.

Before it was completed he saw me at an outpatients clinic and seemed pleased with how I was doing. In fact, his words were simple, “If I hadn’t seen your MRI scan, I would be convinced that you were doing well, so my advice would be for you to go off, enjoy your life, plan your wedding and I’ll see you at the start of 2010.”

But, just a week or so after the MRI scan I got an unexpected appointment to go in and see him again. Naturally, this worried me. And I was right to be worried. He immediately told my fiancé and I that the MRI showed new areas of demyelination. For these to have occurred in less than nine months was a scary prospect.

So a new plan of action has been taken and I am now being referred to an MS specialist at the end of this month. Since then things have taken a downward turn.

My attitude has not changed - I’ll talk about that at a later stage - but I have suffered a few setbacks. The major one involves my feet. At the end of October they started to get a bit numb on the outside edges and it was initially so slight that I hardly even noticed, if anything my shoes sort of felt tight. But then it was very obvious.

I remember having a bit of a cry to myself, but it was more to do with what I thought was coming up ahead than the actual numbness itself. Over the course of a few weeks they did get worse and by the time Christmas came around, I could barely walk.

The numbness started to be intermingled with a burning sensation, which would then give way to a series of pins and needles. It’s a weird feeling, hard to describe and I almost find that what I’ve written doesn’t quite do it justice.

There are also moments when I touch my feet and they are ice-cold, but I can’t feel it. Then when they heat up, they are lukewarm to the touch but absolutely burning inside. At one stage the pins and needles crept right up my foot into my ankle, and the pain was hard to bear. I started hobbling about on my heels, desperately trying to keep the weight off the foot to try and minimise the pain.

It was then that I spent a whole week laid up, moving only to use the bathroom and little else.
To say I found this time hard is an understatement. It was very isolating and my mood dropped considerably. Family and friends were busy getting prepared for Christmas and I know if I had asked them to visit they would have done so but I felt guilty taking them away from busy schedules.

In the end, I made myself get dressed up and join people for dinner and a few drinks here and there. I always drove, or was driven, rarely drank alcohol and was always home before midnight - but the company and atmosphere in itself was enough to get my mood up.

By the New Year the pain had moved from an unbearable grade 10 to a more manageable grade 3. That’s where I am today.

“Is it MS? Maybe. Maybe not.”

These early posts are a background - getting to where I am today - and follow on from previous posts.

I was called back to see my neurologist - someone drafted in by my local health trust to plug the gap in neurology services. As such, he only came to the city during weekends and my first proper appointment with him was in April 2009.

Because it was a Saturday, my other half (from here on in, called J) was lazing about. He had been up early for work all week and I insisted that he stay at home. This is a reflection on just how sure I was that nothing was wrong. But when I sat in front of my neurologist, he talked around the results before tentatively coming out with, “There’s a chance that you have MS.”

As a journalist I had interviewed MS patients before, I knew what it meant and I remember switching off a bit as he continued the conversation. He was very vague. “Is it MS? Maybe. Maybe not.” But he was very clear that my MRI scan had showed up sections of demyelination in my brain - a sign of the condition.

The rest of the conversation seemed to fly by. He told me to go home, live my life and see what happened. In fact, his very words were, “Come back and see me if something happens. You know, if your foot falls off or whatever.” On reflection, his manner with me was disgraceful. I can only hope that anyone else who has the unfortunate circumstance of seeing him after me is treated with a bit more dignity. That he told a young woman, with her whole life in front of her, news with such massive consequences, and play it down so off-hand, is beyond belief.

But, there was nothing I could do but drive home and ponder the future. When I walked in the front door, my fiancé took one look at me and I burst into tears. In the few seconds it took for me to get out exactly what the consultant had I said, I think J had me dead and buried.

In all of this situation, that’s something I hold close. I was not given a death sentence.

Investigations begin

Visiting my doctor was not very helpful. Rather than focus on what I was telling him, he seemed intent on finding out if I was depressed or not. I suppose it didn’t help matters that I was sat in front of him, near breaking point and unable to voice my real concerns.

But the second collapse had really shook me up. And while I have real empathy for anyone who suffers from the horrors of depression, that wasn’t what was wrong with me.
Eventually he was convinced that I needed some further help and/or investigations done.
So, I was pencilled in for a neurology appointment.

Again, the doctor wasn’t the most helpful - which is becoming a recurring theme - but he did decide to send me off for an MRI scan.

Given that the scan wasn’t completed until January of 2009 - some six months after the second collapse - I had honestly put all thoughts of being sick to the back of my mind. Apart from feeling tired and few headaches here and there, I felt fine.

Also, in October 2008 my darling boyfriend proposed, and my thoughts had been taken over by wedding preparations.
But when the MRI scan came round it did make me think - what if there is something wrong?

Then, the women operating the MRI explained that I would be in the tunnel for around 40 minutes, with four seperate scans being taken. I counted out the scans and was relieved it was over.

However, when I was taken out she explained that I actually needed two more scans done. It worried me that this was in addition to the usual procedure - and I did wonder if there was something amiss that she felt was worth investigating further.

But told myself that if anything was REALLY amiss then my neurologist would be duty bound to tell me asap - with nothing forthcoming from him, I put my head down and got on with organising my wedding.