29. Back by popular demand.

In the past few weeks I have been asked several times whether I am still writing my blog. Well the answer is, of course I am! In the general sense of the word of course, as I haven’t actually written anything for over a month now…

The problem has been, you see, that not much has been happening on the MS front. My MS hasn’t been up to much and so consequently I haven’t had much to write about. That isn’t to say that I haven’t been up to much – in fact quite the contrary. I could tell you about my recent trip to New York, my weekend to Belfast with the girls, the arrival of my new nephew, the crazy few months that I’ve had at work – but none of those things have anything to do with MS and as this is an MS blog I guess I ought to stick to the point.

Having MS is now just one of those things and not something to which I give much thought. Well not on a regular basis anyway. As I’ve said before, if it were not for the daily Copaxone injections, then I could quite easily forget about it altogether. In this regard I count myself very lucky. There are people who think that having something ‘wrong’ with you must mean that there are things you ‘cannot do’ – but this is could not be further from the truth. In fact it makes me do more than I did before. To make the most of things. Because life is precious and ought to be lived to the full.

Anyway back to the point … something MS related did happen this week. And so it only seems right that I write about it.

On Friday I went to see my consultant at the MS clinic for the results of my recent MRI scan. Fortunately I was off work and so didn’t have the usual mad-rush-to-hospital-rush-back-to-court situation that usually accompanies my appointments nor the series of work phonecalls and texts whilst I was there. Unfortunately the hospital obviously didn’t know that I was off work and did not have the usual mad-rush-to-hospital-rush-back-to-court situation that usually accompanies my appointments and had given my an appointment time first thing in the morning thus preventing any sort of off-work lie in.

I sometimes feel like a  bit of a phoney at the MS clinic and Friday was a particular example. Looking around the waiting room makes me question whether I have the same condition as the other patients. I don’t have any difficulties in getting around, any outward signs that something is wrong. It makes me feel like a bit of a fraud, like my appointment time could be better used by someone else who actually needs it.

I did the walking test as is the norm at these appointments. The fact I got the quickest time in the clinic that day (under 12 seconds) only added to my feelings that I was wasting everyone’s time. I managed to subdue my victory lap and ‘Mobot’ on the grounds that it was wholly inappropriate in the circumstances.

The results of the scan were also positive. The existing lesions on my brain (shown on the previous scan as white spots) have improved, healed, and so become less visible. It is likely, although not certain, that this improvement is due to the Copaxone injections. On the down side there was one new white spot which hadn’t been there before. As my consultant explained, the Copaxone does not provide 100% protection against the formation of new lesions, although my take on it was that this was pretty good all round. Especially in light of the fact that this lesion hasn’t resulted in any new symptoms.

It seems that Lucy Lui and the other angels have managed to keep a lid on things. Think that anger management course I sent them on must have been beneficial ….

The consultant described my MS as being ‘inactive’. Whilst that is something I am definitely not, it certainly seems to be the best situation for my MS.

At this rate Lucy Lui and the girls will be taking up Buddhism…

… and I might have to diversify this MS blog …

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2 thoughts on “29. Back by popular demand.

  1. I am pleased to hear of your MS inactivity. Let’s hope it lasts. I also recall that phase when I, too, felt like an MS fraud – and it lasted for a good 8 years after diagnosis until a walking stick became my weapon of choice before 6 months in a wheelchair, then back up on a stick for 2 years until, 13 years after diagnosis, the wheelchair became a way of life.

    Of course NONE of this might happen to you. The only thing I have studiously avoided have been the CRAB drugs because only 30% of people get 30% less relapses. That’s a 1 in 9 chance of them ever working and research has shown that none of them prevent the same long term outcome of the disease and most of them are immuno-suppressants

    Call me a lily livered nancy boy but I chose to go au naturel with my treatment,

    All the best
    Jon

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