Monday, 23 January 2017

Wilson's Disease

It's been a quiet few months on the blogging front but there's been a lot going on behind the scenes. I mentioned before that I was being tested for horrible things. Last October my neurologist brought up the possibility of Wilson's Disease. WD is a genetic condition where the body can't get rid of copper and you end up with a toxic amount in your body. If untreated it is usually fatal before 40 but if found can be easily treated with medication.

So in October I did the copper test and anxiously awaited the results. I was told it would be mid November before the results came back but even by my next neurology appointment in December we still didn't have them. Then on 4th January I got a letter to say my copper is indeed high. It was and still is an extremely stressful time.

Although the neurologist referred me on we couldn't wait another six weeks so we booked to see a private consultant. WD is treated by a gastroenterologist. We saw him last week and his view was that the copper was only slightly high so probably wasn't WD but obviously can't say for certain. He wants to start the testing again and see what results we get next time.

In the meantime things have really gone downhill and I'm back in the wheelchair full time again. I'm falling daily and couldn't get upstairs last night. Everyone is looking after me but it is incredibly frustrating not to be able to do normal things.

Tomorrow is a trip to the cardiologist and then Wednesday is a liver scan. Don't say i don't get out! It's hard to be my usual cheery self when all this stress is hanging over me but normal service will be resumed soon. I'll get there.