Tuesday 1 January 2013

CHARCOT-MARIE-TOOTH DISEASE Part THREE

I have had a week or two to find time here and there to think about my families medical history as well as speak to a couple of members of my family too.

Now although one had a knee jerk reaction of stating it cannot be that because it is hereditary they had failed to stop and consider the individuals members of our family and their ailments as well as the dislike of Doctors or Hospitals. In fact I was a rarity among family members and was always hailed as brave by both my father and my grandmother!

Oddly enough those two latter and late beloved family members were not only two that feared Doctors the most but have also turned out to be key, oh along with the member that said I cannot have it as it is 'hereditary' as they all have it!

Talking to a brother who has had his own MRI, or X-Ray, on his back due to pain we talked about the family history when I pointed out that CMT affects the legs and that...

My grandmother always put her legs up on a coffee table using a pillow for comfort.

This went on as long as I remember...

She also used to get very tired coming back with shopping and look like she was about to die and she did this regularly as my grandfather never learnt to drive.

She had terrible varicose veins.

So have I.

So did my sister and all of us while young my sister having hers removed.

So has at least one of my brothers.

My father had trouble with his legs (everyone pointed this out and was worried about it for years but my father NEVER registered with a Doctor and that means NEVER)

Father had varicose veins, phlebitis & lower legs used to swell up quite large before he died. So bad circulation then and well I would wager that this circulation symptom will crop up a great deal in the coming weeks?!

I was in my very early twenties when I developed my varicose veins over my right calf muscle.

Now as I home in on what ails me and discover that not only is it behind all the things I have whined about on 20 years, then all the things I was SCARED to even mention, but that it looks to be a major factor in my families medical history!

My brother and I had a good conversation about skipping generations and that I pointed out repeatedly that it was the LEGS that are affected first. He also mentioned about HIS back problem and I pointed out that our other brother has a back problem too. That is three out of three for the men and I am not sure about our one sister.

Now quite WHY it has affected me in so many ways is an absolute mystery presently. These may be the things that Medical Professionals do not understand at present. However the one thing that I am good at that any of you know had you read even 25% or this blog is that I can spot patterns and reasons that many cannot and even those trained to t high level in their fields cannot do.

I have been very active all my life and in a variety of ways, I have also had a series of accidents though mainly as a child. AT 14 I was knocked down very badly by a car while riding a bike. Never broke a bone though but bystanders thought it a miracle that I lived. Though I blacked out I have always thought from what they told me happened ... yes it was nothing short of a miracle.

I have explored huge, deep, dark forests both here and on the continent in the dead of night and from about the age of 12.

I have exercised in many different ways and done a great deal of body building for years and then there is the cycling, the martial arts and likely short spurts of other things besides.

Despite the government attempts to label me as lazy I am anything but this in fact I hate having nothing to do and nowhere to go and hate the thought even more so that there may be a day before very long that even had I somewhere to go I will not be able to?!

I have been telling people for many years that this thing that I have is ever so slowly getting worse each year and that I know I will be completely immobile at some point. I used to say mid to late 50's but I do not think now I will make it anywhere near that far!

Currently though and now that I sit here typing this out, typing is also becoming a problem and I am making more and more mistakes to my frustration, I am curiously thinking about the back conditions of my brothers and me and the lack of it from my sister. I think I may know the answer as all of us guys worked with tropical fish for years as a career and you are forever bending over syphoning out water...

...though I fully intent to have some conversations about this and more thought over the coming weeks.

For now though Happy New Year to you all and remember tomorrow is the 2ND JANUARY 2013 and therefore appointment day with my GP over all this!

Will the NHS Podiatry Biomechanics Department LIE the same way the back specialists just did?!

Not long now.

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