Two steps forward…

You know that feeling. You think you have it sussed. Your life is in flow. All is good. You can see the road ahead. And then, boosh. A curveball you weren’t expecting smacks you between the eyes.

That’s just happened to me.

I’d been searching for a diagnosis for nearly a year after my body started shutting down, bit by bit. Eventually I was told it was likely ME and so I started really looking after myself and learning essential skills such as pacing and stripping stress and worry out of my life to avoid its crippling effect on me.

Well a consultant got in touch and called me back to hospital, not satisfied with that working presumption of ME.

I’ve now been sent for multiple tests for a range of things including carcinoid tumour, pheochromocytoma, medullary thyroid cancer and hyperparathyroidism.

I’m also being tested for a genetic condition called Multiple Endocrine Neoplasia 1 – which seems to involve lots of tumours growing in a whack-a-mole way in various parts of my innards – and I am having a bone density scan.

This week I’ve also had a shock dose injection of vitamin B12, and am on additional supplement including industrial quantities of calcium and other vitamins.

The good news, if that’s the right way to phrase it, is that the consultant says the ME diagnosis may be correct – and so all the things I’m doing to manage my symptoms remain correct. But until these other things have been tested and ruled in and out, the search for a definitive diagnosis is back on.

I’m not wholly sure how I feel about it. Part of me feels that after receiving an ME diagnosis this is a setback. But another part of me is pleased that somebody is being really thorough with me. On balance, the latter is where my mind is settling.

Why am I sharing this?

I don’t know really. I guess it’s because writing has proved really cathartic so far… so getting it out there seems a reasonable thing to do.

It might be ME. It might be MEN1. It might be other stuff. In the meantime my body feels like a pin cushion and I’m sure I rattle with tablets when I move!


  1. It sounds like they are being very thorough – I just hope you get a firm diagnosis very soon as it must be a confusing time. I’m really enjoying reading your blog posts and it’s great that you can write at times that suit you. I think writing and sharing is very cathartic. X


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