Wednesday, 17 April 2013

Easter Holidays, Tattoo and Tests!

So ALOT has been going on since i last blogged!

Firstly i fractured my ankle on the 2nd to last day of term, why is it always me?!? I was going my normal speed of 10mph in my chair and the eletric door sensors didnt pick up i was there, so the door closed on my foot, sheering of my £500 footplate and i am lucky to get off with such a small break! Anyways that was nearly 4 weeks ago and i have my foot out of my cast boot and its healing well - the Bone doctor told me this morning :) so yay!! Thats over with now! One Less thing to worry about!

Something more exciting now! I got my first Tatto on Friday! It took about 20-30mins and its amazing! I LOVE IT! I got the word 'breathe' with some butterflys - which always reminds is me that even though life with 26% lung function is hard, you have to appreciate each day as you will never get it back, and life is as delicate and beautiful as a butterflys wings. So while its still beautiful, respect it. Ok enough of that soppy stuff haha. And the word 'Breathe' is a bit obvious....
 So here it is! :)

Yesterday I went to my Muscle hospital - The national, Queens Square in  London. I saw my consultant and we spoke more about what i could have and he thinks its something i have been born with, i had 8 vials of blood taken! Yes... 8!!!
Looking back at my muscle biopsy it had glycogen in it, which suggests Pompe disease but without testing my blood to see if the enzyme is there or not we dont know. So im waiting for that result. If it comes back low, then i will have pompe disease which has been suggested to me and my family in the past. He also took some DNA samples again to check for other inherited conditions like MD and other genetic diseases. I have now been steroid free for 10months and my muscles have not improved at all, infact my hands are now weaker, though i hate to admit it! So this means that my muscle disease is not caused by steroids, and if it is i have had a severe reaction to them that has never been seen before, which is very very unlikly!! All the people who had steroid myopathy diagnosed, when the steroid treatmet stops the muscle returns very quickly, the latest is 6months and i am way past that now. So it is very unlikly to be that. So i have a lot to think about! I just hope one test comes back with a diagnosis for me! It would be so much easier!! I am also waiting for a 2 hour MRI Scan of my neck, full spine and thigh and calf muscles to see if they are built 'normally' and to see if my spine is ok due to my bladder muscle stopping working!! - worst part of my whole condition LOL So yea.... hoping the test comes back with some awnsers :)


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