Saw a consultant this morning who said all tests for Lupus have come back Negative (ANA being 40%) EXCEPT my Lupus Anticoagulant which has now come back 3 times positive and this 5th time was inconclusive.
He has told me I have Fibro Myalgia and as I have Chronic Fatigue and Chronic Fatigue is ME…but he said it could be ME and FM or FM and ME - ‘‘does it really matter what it’s called. Labels mean NOTHING’’. He would not diagnose ME though even though he told me I had it. I have no idea why. He was very, very shitty and pissy with me and my husband whole way through.
He has retaken the Lupus Anticoagulant - WHY?? I don’t have Lupus according to him so why should that test matter??
He has told me to come back in 3 mths and see whether the Lupus Anti Coagulant in Positive or not. If it IS he’ll discharge me back into the care of my GP who’ll ‘prob put me on blood thinners’ and if it comes back Negative he’ll discharge me back into the care of my GP who will have to find another route to work out what is causing symptoms not covered by FM and ME. So either way I’ll be discharged after waiting for 2yrs and having 1 x 20 min and 1 x 10 min (today) appoinments.
When I asked about tests that come back negative now can come back positive in the future (classic example being my liver func which is constantly up and down) he said that he didn’t care about what tests would say in the future he could only treat me in the here and now. And apart from the FM and ME I’m apparently totally fine!
I am scared and frightened and don’t understand what he was talking about but he wouldn’t take the time to explain because he was ‘‘very busy’’ and had ‘‘sick people to look after’’.
I guess that’s put me in my place and it seems my place is not here.
Thank you for all of your support through my short journey with you. I have appreciated everyone who took the time to read and answer my questions or offer support. You have def been much nicer than the Dr, that’s for damn sure!!
Oh some good news…I am no longer severely Vit D deficient. Yay!