I don't think it's a relapse

It’s not a relapse. I didn’t think it was. When the tight numbness around my middle had started on the Friday afternoon, I did very little for a few days. It didn’t really improve but neither did it get any worse. So I figured it was ok and drove twenty miles up the road to see a friend. It didn’t get any worse then either. It was just there.


By the time I went back to the Research Centre, another two weeks later, I had come to the conclusion it was fatigue related. When I woke up in the morning, the numbness had almost gone, then by the afternoon it returned, then lessened again overnight. Apart from that, nothing had changed. I say that; my walking speed had slowed but I could go the same distance. And so the EDSS (Extended Disability Status Scale) assessment score was pretty much the same as it had been the last time. I could have told them it would be.

I met another lady, Mary, on her Day 7 assessment. We compared notes about our experiences of MS and the trial so far. It was nice to see the nurse who does the Day 1 and Day 7 assessments. They are the only ones he does. He made us stop talking when he was in the room because he is not supposed to know anything post Day 7. He’ll only see me again if I have to stop and restart the trial. When my regular nurse came in to sort out some dates, he told her not to look at anything with Mary’s assessment. She’s not supposed to know what happens in Day 1 and 7, only before and after. When they left the room Mary and I resumed our conversation.


The other lady she had started with on Day 1 had gone into relapse and had needed to stop the study. I didn’t ask what would have happened if I had relapsed. It didn’t matter. I was cleared to continue without interruption. At last, I can sort out my dates and book my holiday.

M & S

WHAT DO THOSE TWO LETTERS MEAN?

MARKS AND SPENCER

MULTIPLE SCLEROSIS
MANY SCARS
MYSTERIOUS SYMPTOMS
MOUNTAINS TO SCALE
MASSIVE SHOCK
MUD AND SLUDGE
MUCH SHIT
MOVEMENT SLOWS
MORE STUMBLES
NO! I’M NOT DRUNK

MONSTEROUS AND SIMPLE

MAMMOTH AND SMALL
MEAN AND SCANDELOUS
MINOR AND SERIOUS
MOMENTS OF SERENITY
MANIA AND SADNESS
MAD AND SILLY
MOVIE STRIP
MAKE IT STOP

NERVOUS SYSTEMS PLAY CHINESE WHISPERS

INVISIBLE SYMPTOMS THE WORLD CAN’T SEE

FATIGUE...

IT SEEPS THROUGH MY WHOLE BODY

EVERY BONE AND EVERY MUSCLE

OVERWHELMING AND TOTAL

THERE IS NO ESCAPE

THE REST IS A WALK IN THE PARK

ARRH...

WOULDN’T THAT BE GOOD?

IF ONLY I COULD...

 

Day 28

Back to the Research Centre again. A short visit this time. I needed to not take that day’s tablet until after a blood test, so they could see how much of the drug was left in my system before the next dose. I guess that’s a way of helping to work out if the dose is right, with the right length gaps between taking it. The trial’s been quite a slog so far, but it’s only the beginning that it’s this intense, then it eases. Next set of assessments after today will be at Month 3, then Month 6, Month 9, etc. until the end of the trial in three years’ time, or thereabouts.

People keep asking me if I’ve noticed any improvement. All I can say is that I’m either tolerating the drug or I’m not on it. I’m not having any adverse side effects, so that’s good. Even if I am on it, it’s not meant to improve anything, only slow the progression. So I’m still not going to know, until the end when all the results are compared.

What I do know, through regular and thorough assessment, is exactly where my health sits. That and the knowledge that I am helping to further MS research makes it worth doing. As far as I’m concerned, the only thing I have to lose is a bit of blood and a bit of time. And it's interesting to learn how research works.

I bumped into Andrew again. He was also doing ok and not having any side effects. I had a bit of a scare, though. A few days before going up for my Day 28 assessment, I started having increased numbness round my middle, at the base of my ribcage, commonly known as the “MS Hug”. So the Research team were a bit concerned that I might be going into relapse. They wanted me to go in for an extra assessment. It had better not threaten my holiday.

IT SEEPS THROUGH MY WHOLE BODY

I was invited to attend the launch meeting of The MS Society Clinical Trials Network, to think about the kinds of research they want to fund. The Network is a gathering together of researchers interested in Multiple Sclerosis. It was formed to look at the ten research priorities, important to people with MS, which the Society put together following consultation with its members.

This first meeting focused on three of them –

1. Which treatments are effective for Fatigue in people with MS?
2. Does early treatment with aggressive Disease Modifying Drugs improve the prognosis for people with MS?
3. Is Vitamin D Supplementation an effective Disease Modifying treatment for MS?

Within the day there were workshops to discuss each and, as someone with MS, I was invited to attend the Fatigue one.

 

Fatigue is one of the most common and debilitating symptoms of MS. It is also invisible. It’s difficult to describe and is not like the exhaustion you feel after running a marathon. That is what I call justified exhaustion. Fatigue is unjustified. I resent it. I haven’t done anything to justify or explain why I am so tired.

 

The researchers were interested in my experience of fatigue and how it differs from being tired and I very much felt part of the discussion.

 

IT SEEPS THROUGH MY WHOLE BODY

 

EVERY BONE AND EVERY MUSCLE

 

OVERWHELMING AND TOTAL

 

THERE IS NO ESCAPE

 

 

The words are from a poem I wrote. Or think of severe jet-lag without necessarily being sleepy, combined with the sheer weight of depression without necessarily the low mood.

  

If defining fatigue is difficult, measuring it is even more so. I think of it a bit like pain in that respect – it is what the patient says it is. Here do you start?

 

We looked at some of the research that has already been done, much of it with Chronic Fatigue Syndrome. There is much to be learned from research in other areas. Cognitive Behaviour Therapy (CBT), in its various forms, has also been explored in terms of managing fatigue, with some positive results. There was lively discussion that could have gone on for far longer than we had time for.

 

I look forward to the next meeting and taking it further forward. Watch this space.