Hi All, I have been going thru 3 yrs of hell. Cluster headaches, now morphed into pain all the time on left hand side of head, down through eye, painful leukocyte rashes on arms, legs, hands (palm and back), feet (soles and back) which leave dark red stains on my skin, prescribed meds for increased allergies, sleeping for 18 hours when I have a flare-up, memory is so bad it is affecting my job, nailbed capillary damage in some fingers, nails pale/whiteish leading to a pink band before my nail tips, high dopamine and insulin levels in blood leading to blackouts, vision problems, extreme weight gain tho eating less and exercising more, very painful finger joints (been told osteoarthritis), extreme dizziness - thought my mattress was vertical when I woke and held on like grim death (sounds funny but really wasn't) also have these weird bad spells when I feel I am sitting still but my head has been shoved 3 feet to my right?, no balance and falling over a lot. Biopsy (organised by dermatology) was positive for LUPUS. I had to plead to get to a rheumy after that. His first line on meeting me was "I have been asked to rule out LUPUS". Which, he'll now be so pleased about, he has! I had one sets of bloods, proven capillary bed damage (he did not accept this as only 2 nailbeds showed damage!), sent me for Neuropsychologist testing for memory which he wrote "I have seen the report and quote from it - essentially these results should be very reassuring for her as there is no suggestion on formal testing that there are any areas of objective deficit. He finished by stating he had "...no evidence of a connective tissue disorder and there is nothing further I can offer". I am lost.......I have a positive biopsy for SLE - is that not evidence? Can a biopsy be wrong? I have asked him this previously but had no answer. My memory issues have me at the point of receiving a written warning from my employer for the drastic reduction in my ability at work. My family and friends organise something with me and know they have to do a "are you remembering" check as I have forgotten. I also "lose" words mid-sentence which is so frustrating. If my Rheumy has washed his hands of me, can anyone suggest a LUPUS expert based in Scotland whom I can ask for a referral to as a 2nd opinion? I do not want LUPUS, it is a horrible disease and my heart goes out to everyone who has it. I am, however, at the end of my tether and cannot seem to get a diagnosis nor the information I need. any help/advice would be greatly appreciated x
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