Ok - I have ME, or at least, that's the latest diagnosis.Because of speech problems, neuropathies, and muscle tremors, I've been referred to a neuro - he thought there's not much to be worried about but did a MRI 'for reassurance'
Then, writing to my GP, he says my bloods came back as follows:
FBC, U & E's, ferrous, ENA, anti-DNA,LFT, bone profile, TSH, B12, folate & HbA1c all normal/clear.
ANA 1:1280 with a homogeneous pattern. He then says that he wonders if Rheumatology are aware of the positive ANA, and that if this is a new finding, then could the GP let them know.
Obviously somewhat intrigued as to what this all meant, I looked it all up, so that I was prepared to talk to my GP about it on the phone. Her declaration was, was that as the ANA had previously been positive when I saw the rheumy in Mar 2010, this was not a new finding and therefore nothing needed to be done. So I questioned:
- that ME isn't supposed to show anything in bloods, surely?
- that a result of 1:1280 was high enough to not be a false positive. and that it meant there's quite a lot of inflammation going on somewhere?
- that I have hands and feet that swell, I get a red rash on my face & chest when I flare up, my breathing gets bad, and my skin itches and reacts to odd things at odd times, and I react to the sun badly - was this not a sign of lupus?
To all of this, she said she didn't know, and tried emphatically to say there was no point in sending me back to Rheumatology, as they'd already seen me.
Eventually, she agreed to write to them, 'to see if there's possibly any other auto-immune possibilities they might have missed." But seriously, am i being unreasonable? I feel like I sit at home, doing everything they ask of me, but essentially ignored and left to my own devices. She didn't think it was a big deal that I couldn't go outside, 'because, after all, you can get your shopping online'. I have FOUR children - two of which are under two. HOW can it not be important for me and them to get out? I have to say, I try to be so positive about things, but this single conversation has really upset me, probably unreasonably so, but I feel I can't even cry or get angry any more for fear of being labelled histrionic. I can't even go to the doctor's with new symptoms because I'm labelled as a hypochondriac - this is written in a copy I have of my notes.
I get fed up with talking about my bloody illness all the time, but it's the only thing I have to share with people now. My best friend just had her first child, I couldn't support her practically at all, and despite having undergone a traumatic labour SHE came to visit US afterwards! I just hope that when we've sold the house and moved I can find a better GP. Anything's got to better than this. Sorry - rant over.