Aside from the fact I’ve been away, there has been another reason for the silence.

I have a medical appointment coming up. Its with someone who’s type I know but have not met personally – they are a Neurologist.

NEUROLOGIST: Someone specialising in, well, neurology, and usually happy to do a biopsy as quickly as possible.

Why does this cause a silence? Its a new chapter for me – I’ve not been to see anyone about my condition since I was about 20. Last words were:

lets do a biopsy and see what that tells us

Need I say more. In case you can’t tell, I’m not a fan of biopsy for this. The reason is that to diagnose for my condition, they take a chunk of muscle, which is a very invasive and painful procedure. I am not a fan of such things that involve pain.

But MBW has been researching and thinks that they can do MRI scans now too, to detect the muscle and proteins around the muscle.

So, if I object to the methods of diagnosis, why am I going through all of this?

The first is for MBW, Monkey, Nuzzle and Scratch. The Girls could all be carriers of my condition and they do need to know what I have. Let them obtain genetic counselling if needed.

The second is for prognosis, for MBW to know what’s ahead. She deserves to find out, to give her a chance to… I don’t know, prepare? Something.

I’m also worried – what if the identity changes. It could put an entirely different spin on my life with its impact. I’m worried about how this could all affect my marriage, my relationship with my children.

I’m objecting. I don’t want to be cut open by someone paid a bonus for each operation they do, for someone who’s typical motivation has always been to do a biopsy and get me out of there.

What do I want? I want to know what I have (again), from a professional who wants to help me find out the result and see this very (psychologically) difficult journey, and maybe find out some prognosis. And I don’t want it to hurt.

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