Hello I'm new I think. That is, I'm not sure if I have lupus and I'm very upset today and I need help and advice if possible. I am 99.9% sure I have lupus.
I have a bad rash spots cysts and redness on my cheeks and now on my chin. My nose has swollen to twice it's size before and I have sores in my nose and down my throat. I have a huge lump under my chin in my throat and every morning my bottom lip swells. I have chipmunk cheeks and a double chin but - I look overweight on my face but i am probably underweight . 2 years ago my face got unbearable with the rash and cysts and scabs. It was hot and really painful and burning itching. Doctor said I had rosacea and put me on antibiotic 2 years. About 2 months ago I had bad pain in my stomach and I stopped the antibiotic. I then got really ill had chest infection but my stomach or what felt like stomach hurts as well and I was sure I had stomach problem so didn't carry on with antibiotics .
I started to Google face rashes and that and thought I had a demodex worms all sorts amd de wormed everyone....but pains inside and headaches and sneezing and all sorts didn't explain it and it never went away. Anyway I found lupus eventually and was dumbstruck at the list of basically my symptoms from rash to reynauds . All of it and more. It took a while to get there but I reckon I'd still be on those antibiotics and being fobbed off for all the other stuff I mentioned to the doc he dismissed over and again.. So off I went to the doctor and he looks worried and that but offers no solution adds blood thinners and that to my tablets and changes antibiotics. I go back and tell him I think I have lupus. He refers me to a dermatologist and doesn't seem convinced at all. But he does blood tests and calls me to say my MCTD screening came back normal but he's referring me to rheumatologist as well. I get copies of blood test. Was hard to interpret but it doesn't look good at all for a woman in her 30s. Why would he record it as normal? There was evidence of MCTD but it was low he says so it is negative. Whether it is low or not it is there so I don't undertand him. He basically isn't bothered and he's done his bit I feel he is very curt with me again. I just figure I have to suffer or take his antibiotic and preserve my face somewhat at what internal expense ?
So today I go dermatologist and it was awful. I took my blood test results with me and he told me I tested negative. I tell him no I did not my blood test is terrible and I don't really understand why they don't share the ANA result with me they just say it is low. It doesn't have a number that makes sense to me. It days Blood Chemistry General 0.1 normal 0-1 but ESR out of range and other things that I have read are significant?
So today they do a biopsy on my face. It will take that long to come back i will see the rheumatologist before then. I will probably be fobbed off then again. Today the dermatologist got me to do another blood test. I find it odd I have had 2 blood tests now and a skin biopsy yet no one has checked my kidneys. I am really upset I feel like they are all playing along with me and testing blood and skin but not testing urine.
Anyway if anyone has any advice I'd be most grateful as I am finding it hard to live with the way I look and having no diagnoses confirmed for what could still be some time