What happens when somebody goes and sees a consultant? What can they expect when they go for a visit to a consultant for the first time?

There is a set of international criteria, if you like, to help frame a diagnosis of MS and the current one is called, McDonald Criteria. That is freely available on the Internet. If people Google that they will find it. So what the neurologist is trying to do is see whether the person’s history, their experience of what has been happening to them leads them towards meeting that criteria, if you like. And again the vast majority of people with a diagnosis will meet that criteria, clearly some will be on the periphery, so on the edge of that criteria at some point.

What the neurologist is trying to do primarily is demonstrate what is called dissemination in time and space. So time as in months, days etc. Space as within the central nervous system. So if a person presented with a history of visual disturbance and that sounded very much like optic neuritis. Sometimes people are surprised that the neurologist will then start to examine their legs. So what they are trying to do is demonstrate dissemination into space within the nervous system. So if the person has already told the neurologist that they have a problem with their eyes so they accept that and they are looking for neurological evidence of damage to say the spinal cord or the brain. So they are trying to demonstrate dissemination in time and space.

They do that by listening to the person tell his story, taking a history, examination. So that’s moving limbs, looking into eyes, checking reflexes and then may arrange for further investigations. So that would be things like an MRI scan. So MRI provides a nice image of the structures of the central nervous system and you can see what looks like inflammation on there. They might do what’s called nerve conduction tests. So this is a test to measure the speed of a nerve, speed of the conduction along the nerve. So this might be sensory and the person might have to go and have electrodes placed on their skin. It might be to do with vision again and they’ll look at a chequered board and have little electrodes sitting on their head to measure the speed of conduction on their optic nerve. Also there is something called a lumbar puncture. The lumbar puncture is to try and remove some of the fluid that encases the brain and spinal cord to see whether there are markers of inflammation that have made their way into that fluid. So again MS is an inflammatory condition so when there is active inflammation going on within the body the body produces by-products of that if you like. They make their way into the fluid that circulates around and that will be seen in the lab, they will be able to identify that. The test is called oligoclonal banding.

And did they give it a name at that time of any particular type of MS?

They said it was relapsing- remitting. And obviously, you know, you look that up and you understand that you can go in remission for, you know, a long, long time. For Sandra it certainly seems to have been a bit like that.

But Sandra’s is obviously, it’s definitely plateauing. It sort of tends to have an episode and then you’re left at another plateau, and then you get another episode and then you seem to be on a different level. Because, you’re not really going backwards but it definitely seems to be going sort of like a plateau type basis and I think that’s the thing, So, I think, at the moment, if you have something quite bad, you think that’s another big episode and then you reach a, reach a certain sort of level. I mean you can quite clearly see it now. It’s sort of staggeringly obvious now.

But theres only been sort of like two or three, I think maybe three really bad episodes. Most of the times over the last five years it’s been fairly constant little bits. Very incremental sort of changes and then all of a sudden it’s quite a big change. Because last year it was the fatigue which just knocked Sandra for six. Virtually all the time she was just really, really tired. But she got over that. And was back, to not normal, she stopped going to the gym, but she was pretty active. Whereas at the moment, she can hardly walk ten yards. And in fact ten yards is probably the most. Whereas hopefully that will, you know, go into remission again and if it does that will be brilliant, because that means, that yes, okay you’ve had a horrible time, but then you’ll go back to being sort of, sort of semi normal. Well that’s what we hope. Because the eyesight was really bad, but then it got better. The fatigue got better. But you’re never quite back at the same position. You’re at a different position all the time.

Fortunately, my wife has the relapse and remit kind of MS, which means she does go up and down with it.

But each time shes had a relapse she hasn’t got quite up to the level of mobility that she was before, although she has recovered each time, and the relapses that have come since then, it was diagnosed about nine years ago and since then, the relapses have been very erratic. Sometimes shes had one a year. At one period she went four years without having one at all, which was great. But she hasn’t had one now for eighteen months but she had to start walking with a stick three years ago.

He has progressed from remit-relapse MS to secondary progressive MS in the last five years. And now hes had MS, I think its 24 years so far. So, hes not had a bad innings as far as MS has gone. But it’s been over the last five to seven years that the MS has taken quite a downward turn. In doing that it has caused all sorts of problems with him. He has had to give up work now. That happened about seven months ago.

About, let’s see, it was 19, 2002 when Trish changed from relapse- remitting to secondary progressive, funnily enough I was just retiring. So my retirement went straight into being a carer, and a full time carer because Trish went into a relapse and has been in one, getting steadily worse, that’s one of the things about MS it never gets better, it’s just getting worse so as a carer you know you’ve got more joys and tribune to come.

Theres no cure, yes symptom relief. But also holding back the disease as you know with MS it goes through a number of phases I mean the first phase it just comes on the second phase it goes into relapsing remitting which means that you get better for a while and then you get a bad attack again and then you get better again and then you get a bad attack. And then you’ve got the final stage which is called secondary MS and once you get to secondary MS that’s it really, nothing you can do about that.

But each summertime, May, June time, there would be a little relapse. So she wouldn’t be quite so well. So, thered be a dip in her performance. I would have to do a little bit extra to compensate. And then it was recovery time in the summer. But my wife had progressive, sorry, secondary progressive MS, so we knew things would slowly, gradually get worse.

And he was diagnosed, at the time, obviously, had a lumbar puncture and we got the diagnosis. At the time, obviously, he was still working but he was diagnosed with progressive MS. He hasn’t had the relapsing and remitting type. He has always just had a very gradual decline. He has sometimes when he is particularly bad, and has episodes when he is, you know, pretty disabled and then other times, he manages to get around a little bit more. But, realistically, over the last say four or five years he has got a lot worse in terms of mobility and yeah, just in terms of symptoms.

Like I said at the beginning of learning to live with MS, you know, like I said, like living with cancer or living, but it is that you think that you’re not going to, as you say, from the outset, yes, go home and you’ve got progressive MS and that’s it. But you do learn that there will be bad times but there are other times where things aren’t so aren’t so bad but you do have to accept that, you know, your life will be, as a, I think from my point of view, as a wife, partner, just does change completely, yeah. You know, you, I can’t pretend otherwise. From my point of view, that’s how it’s panned out. So initially, maybe for the first few years, you know, but once you’re at the role becomes much more of a carer it is different yeah, yeah.

So life expectancy, again it’s, there have been several studies that have tried to answer that question, if you like. There is a range of interpretation from those studies. If you looked at life expectancy in totality there is an argument that life expectancy for that population of people, so the whole group of people, might be reduced by in the region of somewhere between three and seven years. If you start to unpick that information what it looks like is that the vast majority of people with MS will lead a normal life expectancy. In other words, MS won’t adversely affect their particular life expectancy. For some people where there is very complicated and advanced disability life expectancy is probably shortened and it’s that group then skews the figures for the overall population. And again there is an argument about whether MS in itself is life limiting or whether it is complications that come with MS. So I would suggest that the major life-limiting risk would be what’s called as aspiration pneumonia. This is where people, their swallowing ability becomes unsafe and fluid can go down into the lungs, consolidate, causing pneumonia and that can be very serious and life limiting.