Since seeing my GP twice about a possible butterfly rash I am now waiting to see a dermatologist in two weeks time. However my blood tests all came back negative and my GP is not being open or informative about anything. I don't know what blood tests were done and the GP and staff there are being secretive about the fact they suspect lupus. If I hadn't looked up butterfly rash I wouldn't know, I saw lupus written on the blood test paper but when I asked the nurse what she was testing for she said I'd have to ask my GP. Why all the secrecy? What I'm worried about is after these several weeks of waiting to see the dermatologist, as I don't have the butterfly rash at the moment, that I'll go there and get fobbed off again, and will remain without diagnosis. The thing is, I feel so unwell all the time that I'm convinced I must have lupus and just want a doctor who cares enough to find out what is wrong. Will the dermatologist be able to do anything that will help me?
If I remain without diagnosis then what do I do about my symptoms which are:
Butterfly rash: I've had this twice. I've also had what the GP previously called melasma, resulting from UV exposure whilst on the pill.
Muscular aches mainly in my back and neck
All over skin itching without a rash
The symptoms of Raynauds syndrome
Joint pain in my hips, knuckles
Metartasalgia which is so bad I can't walk for more than 40 minutes
Terrible fatigue which has been going on for years
IBS and intolerance to gluten and lactose
Headaches and nausea
Jaw tightness and clicking, however this may be due to the fact i clench my teeth whilst asleep
No one has even thought to ask me all my symptoms. I am considering typing all this out on paper, seeing a different GP at my surgery, and asking for it to be added to my records. Perhaps then someone will pay me some attention? What do you honk to this idea? If they know it's on my records it makes them accountable was my thinking.
Any help appreciated, I am feeling terrible physically and so depressed about it all. Without any diagnosis no one is taking me seriously.