Great Expectations (??)

Hello dear friends.

Here is the blog that I said that I wasn't going to write, but lots of people have asked me to do it.... So here it is - apologies if it makes for hard reading. I can't really find the flow today, so please bear with me!

As so many of you know, I was seeing my consultant last week. I had great expectations of my appointment because - after seeing him privately - I came away from the consultation expecting that the next time we met he would have reviewed my MRI scans himself and had them reviewed by a neurological radiologist and would be in a position to advise me regarding work, activities and my future having acquainted himself with:-

• The results of my blood tests
• My head scans (CT and MRI)
• My previous medical history
• My EEG findings

I was really, desperately, hoping that this (NHS) consultatation  was going to give me a diagnosis - but it hasn't. Yes, my MRI shows multiple lesions but no - it hasn't been reviewed by a panel yet. In fact, the consultant himself admitted that (despite his promise when I saw him as a private patient) he had not looked at my scans or indeed any of my results.

Perhaps my expectations were just too great. Larks were not had and - truth to tell - have been in rather short supply recently.

Is it natural and understandable to be disappointed by this? As an ex NHS employee myself, I do understand the immense demands placed on experts but I am, however, extremely perturbed that it will be at least 4 months before I see him again.

What doesn't seem to be being considered is that I am an extremely active person both at work and out of it, perhaps more so than the average 49 and-a-half year old. I have already "defeated" one disease. Prior to my diagnosis of type 2 diabetes in October 2006 I was overweight (18+ stone) and physically inactive, but I now exercise every day – running an average of 25 miles a week as well as other exercise as regular readers of "boretheworldwithmyrunningstats.com" will know.....

Since the seizure, I find it hard to run more than 10km (6.22miles) and my pace is considerably slower than it was – up (down??) from 8m30s per mile to 9m15s per mile. Running is an extremely important part of my life and it doesn't really help to hear "Gosh - 10k?? I couldn't run 10 metres!!" because I could  and was  running 10km 3 or 4 times a week and 25+ on long run days!!. My (obsession with???) exercise and attention to my diet means that I am now drug free in terms of diabetic control. I have been accused of being a bit OCD about it by one or two folk.....

I particularly need to find out what the 30+ lesions shown up by my MRI scan mean – as it is obvious to me and various (fully medically qualified) friends and colleagues that something is not right with me. I am often unreasonably angry, I cry a lot at very little provocation and I feel fuddled much of the time. I, and my wife, know “me” and this is not normal for me. If it is all down to the epilepsy I can accept that, but I need to know.

So, although it now seems very unlikely to be MS, a diagnosis of mitochondrial disease is looking increasingly probable - it is rare but I tick a lot of boxes! MELAS looks the most possible.  http://www.mitochondrialncg.nhs.uk/index.html
Infection and infarction are now ruled out.

So, still no real idea what these lesions in my brain actually are although it would seem that they may actually be completely insignificant! Not to me they're not... The epilepsy though is significant - and it is neither under control nor "going away". The truth, often hidden behind my/our "brave face" is that I am sick of not being at work and of being told "you'll get better soon" because that isn't really a likelihood (but I do appreciate hugely the sentiment behind saying it). Getting better may not be an option but gaining control will (yes it damned well will) happen. I am not a very good patient at all and I find it very hard indeed to be worried, fretted and fussed over. I just want it all to stop. Not knowing exactly what is "wrong" with me is hard work for me, and my friends and family. What really terrifies me is that I will not be able to cope with the same dignity that so many others have shown if this thing turns out to be life ending.

I have had so much support and cards and messages of love that I still feel utterly overwhelmed.One wonderful quote sent by a dear friend says a lot "Prayer is not a spare wheel that you pull out when you are in trouble. Use it as a steering wheel, that keeps you on the right path throughout your life". Whether or not you believe in the power of prayer, I like this concept and the feeling behind it.

Blog 7 - when it comes - will be a positive and joyful one. I promise!!!