Disapointment

It was my regularly scheduled appointment with the MS Nurse today. I had high expectations though. Last month I'd gone for a specific blood test and an MRI.

The hope was to start taking Tysabri which is supposed to be about 40% more effective than the Interferons at preventing and alleviating relapses. My reservation at had always been the risk that goes with Tysabri of PML (a brain disease) - although recent wisdom is that there is only a 20% chance it can kill you, if contracted, it could still leave you more disabled than when you started. The positive news that had started the round of tests is that recent research had determined that if you had not been exposed to the JC Virus in earlier life you can take Tysabri with no risk. So I had the blood test (and an MRI).

The bad news was that my test results were positive for the JC Virus; which meant that I didn't want to to continue with the Tysabri route. I had all but convinced myself that the test would come back negative - so I shed a little tear on my way home. There was further bad news in that the MRI showed 'a few' more lesions than the last I had done back in 2002. Happily my Nurse's computer doesn't have the software to show the scans so I wasn't forced to sit and look at slices of my brain as my Neuro made me do last time, gross!

All in all a bit depressing. For an awful long time my MS was mostly 'benign' (yes, I know, I was lucky!) and the relapses I had weren't too troublesome - a little numbness here and there or an attack of Optic Neuritis. It was only the two really bad ones that lasted about six weeks with the vertigo and total lack of strength in my legs that finally got me through denial and convinced me that I really did have MS; up until that point I still though it was one big mistake!

The problem is now that every relapse comes and goes - but like the frog in the well I go two steps up and one step back; nothing ever quite gets better.

There is another hope in Fingolimod - it has been approved in Europe and is currently going through the NICE process. The problem for the drug, it would seem, is that is costs almost twice as much as I remember being told that the injections cost. More effective than the injections although less effective than the infusion it does provide hope.

Wheel-chair arrives

The wheel-chair arrived on Friday. So far I've sat in it in the living room and that is about it as I was under house arrest this weekend getting some rest.

It is alarmingly large and doesn't fold up nearly as much as I'd hoped. I'm somewhat doubtful about my original plan of keeping it in the boot of the car.

It will be a good thing though. Every time I'm going somewhere that needs a lot of walking input I don't have to think about it any more.

In  good news, the Optic Neuritis seems to have gradually got better and without me realising it has now gone. Standard six weeks with attempted (failed) steroid intervention.

My prescription ran out this week. My doctor's surgery decided (again) to ignore the stamp addressed envelope I enclosed with the repeat request. This meant that the muscle relaxant tablets that help me sleep through my legs at night ran out and I had a few bad nights sleep. The worst being the one where I got about three hours... and still had to get up and go to work in the morning. The prescription has now been filled and all is well at bed time again!

Steroids nearly run their course

First I had the horrible 5 day course of the blue steroids... the ones that taste vile. That made no difference. Then I had the three week tapering course (which will finish on Wednesday). The little red pills... twelve for seven days, six for seven days and three for seven days. An impossibly large amount of tablets for the pharmacy to count out!

Nothing is fixed. I still have ON in my right eye. It is still annoying as it makes it hard to use the computer (amongst other things) and gets worse when I do anything or move my eye too far in any direction.

These are two pictures which attempt to illustrate the effect of ON on my vision. Left is normal and right is disturbed.

My feet still don't have any feeling in most of them - and my toe muscles have taken a permanent vacation. I just bought some 'spa' type-thing made out of soft rubber - like a fancy thing that you put between your toes when you paint your nails - but it goes all the way round so straightens the toes a bit. Hopefully it might make some improvement.

The bad toes and balance means that I keep tripping over myself. I don't notice most of it as I haven't got much feeling in my legs. I have to be like a leper and keep checking for cuts and grazes! That one really hurts as it is a bruise as well as a cut. Ouch. You can see all the scabs and scars - it is always my right foot that trips up my left foot!

The last complaint is my right hand. It has got better since it was at its worst - but it isn't cured. Again the muscles just aren't working properly. Of course, I'm right handed... so it makes it hard to write and also (as a touch typist) hard to type. It makes it hard to do a dozen other things too - buttons, earrings, tying back my hair... no manual dexterity is very irritating! Not only no strength, but not much feeling - I feel like I'm wearing a glove all the time!

Right. Complaining over. On the plus side I've been keeping up my 'do anywhere' exercises and I think it has been helping my legs. On the further plus side - the wheelchair (for long journeys and things) should also be arriving soon.

Here we go again

The five day course of steroids has made no difference to my ON. Off we go on the tapering course then... 147 tablets (and the rest) over the next three weeks. Fingers crossed!

Limitations

It seems that my limitations are more limited than I previously thought. I had a busy weekend... on Friday I was at St Paul's Cathedral; on Saturday I had to take the car to get its MOT (which I had forgotten about and the garage rang to remind me); on Sunday it was off to see my Mum for Mother's Day (lucky my brother was driving). No rest at all really.

And last night and today I suffered. I woke at 3am feverish... drenched in sweat but freezing cold. I asked Rich to get me a hot water bottle, at which moment he pointed out that I probably wasn't fit for work. As my hands were also in agonising pain I couldn't see how I would hold the crutches and was forced to agree with him. I went back to sleep with my hot water bottle... and didn't wake again until nearly lunchtime. I dozed for most of the rest of the day until about 3 or 4 when I realised that I felt much better. I was no longer feverish and my hands were a bit better (although still rather claw like).

The Law of Spoons must be observed. Out of the three days that form my weekend if two of them are to be filled with activity one of them must be filled with sleep and bed-rest... otherwise disaster and flare-ups of old symptoms will follow. As the meercats would say "Simples".

A new one

This time the eye problem isn't Optic Neuritis but rather Retro-bulbaric Neuritis which is a very specific form. That's the science bit... I was lost there. It means that instead of the usual visual disturbance with no pain I have a lot of pain with no visual disturbance.


It took an afternoon at A&E at Moorfields Eye Hospital to establish this. I'm not exaggerating. I was there for over four hours!


I'm off to bed now to take a cocktail of drugs which I suspect will knock me out until morning. I'm hoping they'll stop me waking up in pain when I move my eye in my sleep at any rate.

ON and other things

My suspicions a few weeks ago that I was getting another dose of ON seem to have been bang on. This time I don't have so much visual disturbance (which is useful) but I have terrible pain behind my right eye. Most of the time it is actually only a dull ache - unless of course I move my eye at all. You wouldn't believe how much you move your eyes in a day.

There isn't much to be done I suppose. It is probably too soon since the last dose of steroids to take another course - just have to hope that it is a short attack.

In addition the car broke down yesterday and I had to schlep around Charlton and the Greenwich Peninsula. No spoons left today, so have taken to my bed. Really disappointing as I had big plans for this weekend.