Jo

Hi evry1.. its 1st time ive ever wrote or really discussed my illness.. ive had dle for nearly 14-15yrs! Feels like foreva! I eventually found out afta about 2yrs of been passed around to dematologist and uncountable blood tests and skin biopsys and hair folical tests and evry steroid cream and oitment known to man!!! I eventually had bloodtests known as C3 n C4's, also full body skellital survey.. concluding i had dle also m-gus.. my upper part ov my body looks so badly scared i only wear total coverage clothing.. maybe earlier diagnosis and better education to local gp's maybe have reduced this problem.. i have on goin hair-loss, absolute fatigue n depression and aches n pains so bad ime on several types ov med.. i ad mri 2yrs ago on my neck concludin i ad mod/severe arthrititis.. ive bin on sick since may 15.. ad anothet mri concludin i av a herniated disc now.. i was on sum tablets called naproxen for this but ended up been really ill! Ad a stomache bleed n ended up with aneamia.. ime now havin test to see if the lupus as caused my arthritis and is attackin my bone tissue aswel as skin.. i must say i av actually been mentionin and askin both doctor and dematlogist for 2yr if there was a possibility my arthritis was lupus related!!! Maybe if they ad checked 2yr ago i wudnt be in as much pain n discomfort!!! Ive been takin plaquenil for yrs! Also on tramadol, amatryptaline, gabapentin, fluoxatine n omprasole..... uffff! Wot a life!!!!

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  • Hi, I'm exactly at the same stage as you so I will follow this link with great interest. Thanks for posting and lets hope we get some answers soon x

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