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Dear sonshine- my diagnosis took ages and i was very ill. I had to see six rheumatologists the last two gave me the diagnosis. And they were the best The famous Graham hughes the lupus man and his predessessor at St thomas hospital in london. i was diagnosed with sle and sticky blood. but never had positive ana or inflammatory markers. i had excess protein in spinal tap, low lymph count, low vitimain b12, protein in urine, high ige allergy, a pineal cist in my brain, enlarged lymph nodes found on a scan etc etc. everything except the cist pointed at my diagnosis including my physical symptons. but the standard tests have been negative. i was having seizures too which are very scary. Do you have any skin thickening or chnges to your body? cause i have a feeling i have discoid lupus aswell because of this and the nasty scabby rahes on my face. i still have a long way to really feel i am at the bottom of what i have and the treatment starts kicking in. funny you should say you were bit by a tick so was i during getting ill. but lupus people have severe reactions to insect bites anyway so this maybe a possibility. If i were you i would get to see a very good rheumatologist. the american society of rheumaology have a good criteria for diagnosing lupus. You need a doctor that does not just go on tests but your entire history and symptons. Keep all your test results and keep a check on your urine for protein or blood. Go see a good rheumie . I went to the top man in the world and even he thought i was a complicated case. Sometimes its like you don't go to one of his disiples but you have to go to god himself. i appreciate im in england and so thats how i got to see a top rheumie like Graham hughes. But why not do some research on whose the best to see in the states. sometimes you may read a great book by a doc who really understands lupus and you may be able to get an appointment to see him. Good luck and keep in touch. i know how very hard this is.

Zoe x


Dear rojo ,
i was interested in what you were saying about lupus. I was diagnosed with sle and sticky blood after being very ill for a year. however i have this wierd feeling i have discoid lupus too. do you have both types of lupus and how did they treat the discoid? The reason i say this is cause of the horrible skin thickening and lumpy rashes on my face its really chnaged my physical appearance. Id be grateful to know your views.

love zoe x





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