Hi all, I have been suffering for 4.5 yrs now. Had extreme rashes caused by high levels of leukocytes - biopsy of active papule came back as SLE, severe occipital neuralgia (cluster headaches), extreme fatigue, short-term memory loss, forgetting everyday words, sleep for 18 hours at a time, photosensitive, huge weight gain, "hump" on my back (before weight gain!), muscles spasms, severe balance issues, my blood is full of insulin which causes me to black out if really bad.......you name it my body's got it! This ALL started about 4.5 yrs ago. Was sent to a dermatologist who biopsied an active papule during a flair - positive for SLE. HOWEVER dermatologist said he wasn't convinced, told me he thinks Lichen Planus!!! and wanted to send me for 3 light box treatments a week. My GP said No as I would have been hospitalised. GP has put me on a lifetime prescription of extremely strong anti-histamines to stop white cell over production - has calmed rashes but they still come back albeit in a smaller dose when I have a "flair". Dermatologist blocked me from seeing a rheumatologist (my GP told me that) I asked her to re-send request. Walked into the rheumy's office and his first words to me were "I've been asked to rule out LUPUS". My heart sank. I said that if he did I hoped he'd tell me what I DID have. Nope - nothing. Said as I was 50 was probably the menopause! I am still every 28 days and no sign of such! I complained about dermatologist I finally got a mtg 10 months later! during which the dermatologist stated that "...back home in Germany I am a bit of an expert in immunological diseases and I felt I could rule out LUPUS" I pointed out, with respect, that within NHS in the UK he was employed as a dermatologist not a rheumy. Upshot of complaint is, I have been authorised to contact my GP and get a referral to one of the 3 lupus experts within Scotland. Couldn't get an appointment with my GP for this referral request for 4.5 weeks but at least I am booked in. I have been diagnosed with separate things of migraines (it's not), occipital neuralgia (it is), osteoarthritis in my hands, calcium "stones" in my ear (it's not), menopause (it's not), nail bed capillary damage (no reasons provided to me of why it is there) and finally, my GP stated she was concerned that the Consultants will put ALL my symptoms down to depression and "imagination"! Seriously! I pointed to my wine coloured scars all over my arms and legs where the leukocyte rashes have been and said there was no way I was imagining that! Additionally, I have had to call her to my home twice recently to inject me after 3 days and nights of suicide headaches - I was practically feral with the pain. I am now suffering from almost daily palpitations which can and do waken me from sleep - not stressed. My symptoms are getting worse and I feel there is no-one taking me seriously nor helping me - the NHS is making me feel like a nuisance to them - I really feel there is something flagged in my notes saying not to help me. Has anyone else found that no-one will look at the symptoms as a whole, all the consultants look at one thing only?
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