Me - Part Three - Health 2/2
26.08.2003 at 15:45

Part 3 - Health 2 of 2

In the summer of 2001, my M.E. wasn't getting any better, I was getting really fed up of it. I was having new symptoms, different symptoms.

I went to a new GP and told her these new one's, she said she thought my M.E. had gone on for too long and for the first time since the very beginning expressed doubt that it was M.E. She referred me to Dr. Wilks, an M.E. Specialist at the Edinburgh Western General Hospital, he straight away said he doubted it was M.E. He done all sorts of tests and about 3 weeks later, when I was back at his clinic he told me he had found Lupus.

My whole world was turned upside down.

I had gone for 6 years thinking I had M.E. and now he was telling me this... What the hell is Lupus?! He told me bit about it and also told me not to look it up on the internet too much. Up til about 15 years ago, Lupus was a death sentence, something like 90% of patients died. But this wasn't the case now, I wasn't going to die.

Lupus is very similar to M.E. symptoms wise but also very similar to M.S. That's probably the nearest match to it. It is an auto-immune disease, which basically means your body attacks itself. It is also genetic, thanks Dad!

Dr Wilks referred me onto Dr Lucqumani, a Lupus Specialist - a Rheumytologist at the same hospital. I was in with him 10 minutes and he said "I don't think you have Lupus... I think you have M.E." No blood tests, no scans, no nothing. But he said he would try me on some tablets, just incase.

I took these tablets for 6 months, during this time I was a different person, I actually had the energy to get out of bed in the morning. To walk round the shops and still be able to do something at night. Then I got a call -"come off the tablets they have affected your liver" Again, my world fell apart.

Still adament it was *definately* not Lupus he said he couldn't do anything else for me but refer me back to Dr Wilks. Never mind the fact I had all the symptoms of Lupus, the positive blood test, the gene and the tablets worked!

I went back to Dr Wilks in April this year, guess what he told me...? "It is M.E. but I'd put money on it being Lupus" He was going to get me a second opinion.

I decided then to change my outlook on life, I could say "Oh no, I have Lupus and M.E. isn't my life awful, or I could get on and learn to live with it. That is when I joined AYME, how much do I wish I'd joined them years ago?!!

So... now I am waiting to see another Rheumytologist, I have an M.E. specialist, a haemotologist, 3 GPs and a couple of other people on my side. I can hopefully get diagnosed and treated with lupus before it does some serious damage (it's known to attack internal organs and blood, as well as skin)

Things have become more urgent now, my platelets are through the floor but I'm still waiting, waiting, waiting... I just have to hope they get it in time.

So this is me and health, did it make sense? Sorry to go on so much, I just think it is easier to get my background out of the way on my diary, before I can start making proper sense in my present.

I hope I've not bored you!

Love and hugs

Anne xx

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