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told i have lupus then i dont then i do, driving me crazy, why does this keep happening

hi, i was told i had a lupus attack when i was 33, i had a couple of strokes and 1 was quite bad, i then had another where i was in intensive care and my family came to say goodbye, ive had plueracy ect ect, these were the times a SLE attack were comfirmed, i only see a heamatolagist because i am on warfarin, he has done blood tests that have come back negative, 3 times, i am in pain very often, espacially in my hips and knees but also my left hand, was told i dont have artherisis, my heamatolagist said he was going to send me to the lupus centre but has now changed hes mind due to results, he said i have the symptoms but they were expensive blood test and showed negative results, where do i go from here? i am so confused. i also have a 4 year old who wants to do things with me but i find him so tiring. i feel i need some help, but where do i go?

sorry first time on here and iv'e gone on a bit :-)

6 Replies

Hi, this is so frustrating!! If I were you I would insist on a referal to the Lupus unit, St Thomas is great or the London Lupus Centre is the private clinic. A few straight answers will do you the world of good!

Take care



Keep pushing.

Ask for a second opinion.

Go armed with as much knowledge as possible.

A negative test doesn't mean you don't have lupus.

Good luck xx


expensive blood teset how absolutely dare he...take him to task thats a dreadfull answer


You push for answers ,even if negative blood results etc,i wish you well,brave;)


Hi Bensmum, It is your right to have a 2nd opinion, so don't give up. Have you been tested for APS/Hughes Syndrome (sticky blood)? Sounds like you need to be seem by a lupus specialist. Thinking of you and sending hugs and a :) xxx


Hi, thankyou for the replies, very helpful, i do have lupus antiphosphilipid syndrome and diabeties, i also had my thyroid removed due to graves disease, most symptoms i get are normally put down to the thyroid or diabetes, i have been to the hospital to see my heamatolagist (the only consultant i see) how i got there is amazing as i was in so much pain i could barely walk, he took one look at me and prescribed painkillers and said he is sending me to lupus centre at st thomas, wow did it have to get to this point to be sent there, he told me to see my gp to get a walking aid, i tried but the gp said nothing will make a difference and its not good to take painkillers (unbelievable) the pain has been so bad the last couple of days it has made me sick. I cant get my 4 year old to school and he is hyperactive so its been difficult. Anyways i got a letter this morning saying i now have to go on a work related interview, im just waiting for the next thing as the always come in 3's.

Im glad i am finally going to the lupus centre but worried incase they say theres nothing wrong with me and send me off. how does it all work, as i have no idea.

thanks for your replies they made me feel stronger at my weakest time.



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