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Location: March, Cambridgeshire.
Joined: Jul 2005
Posts: 35,535
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Thank you all so much.
Have spoken to Nadia. She is feeling very dissapointed that his walking has taken a turn for the worse. She feels the nose thing could either be high blood pressure and his little stroll would of made no difference she has made me feel a bit better about it like you guys have.
She says it could be that his blood isn't clotting too welll tests would need to be done but at the moment as he seems to be ok we are going to hold off on the tests the other thing it could be is a tumour or someting called aspergillis which is a fungal disease. He cannot stay on steroids if it is the latter so she is off to do some research to see what he could take for the aspergillis and also to help with the other problem. We are not taking him to see her today unless the nose bleeds start again and become worse.
We have kind of agreed if it meant more expansive tests we will not go ahead he gets stressed anyway and to be honest we are on limited time especially now the walking has taken a turn for the worse she said if he were hers she would not do further invasive testing either.
So more monitoring and she will be calling back tonight after she has done some research. I noticed the other day the thick part of the nose between the nostrils had something kind of grey/wite colour like a line so I tried to wipe it off but it wouldn't come off so I thought loss of pigmentation mentioned this to Nadia today and she said something is definitely going on. He is laying in the garden in the sunshine for now and I have just been out to check on his nose all ok no more bleeding but that thing across his nose has changed it is now more white and looks like it has a little sore in the middle.
I will mention this to Nadia tonight. It has changed rapidly within day or so.
I fear his days are numbered now because if we treat for something different we compromise the walking and the neuromuscular disease that is going on. We are between a rock and a hard place I fear.
We also noticed the other day he has started coming down the ramp in the garden with caution again like he did when he first came home he goes up easier he was going up and down with such cofidence and such a swagger recently.