Need advice

Hello ok so im 22 female half jamaican and I went to the doctors about a year ago conplaining of achyness, tiredness and I have alot of protein in my urine after doing a sample so they sent me for blood tests over and over im just wondering if pwople had to have loads of tests like me as they still have not given me a definitive answer yet? Also if people could desvribe their symptoms

7 Replies

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  • Hi I was lucky enough to be diagnosed quickly but I had the butterfly rash bad so it was obvious before any blood test were done.Unfortunately the doctor at the time knew for two weeks before telking us and starting me on meds,i was very ill at the time.

    I was told I had probably had it all my life though,I was always a sick child.

    Lupus affects everybody differently,typical symptoms are fatigue,joint pain and swelling,lupus rash,flu like symptoms,head aches,mouth ulcers..It can also attack major organs like heart,kidneys,lungs.

    If you think you may have lupus be firm with your doctor and tell them,say you want to be tested for lupus.

    I wish you all the best in getting a diagnoses.

  • Hi, and yes! ...It felt like I had a milion tests before a diagnosis!!...... I started feeling ill last August - overwhelming fatigue, achy joints, Raynauds, hair loss, rash on my skin if I went outside in the sun, mouth ulcers, lost a stone in weight ( not good when you're 8 stone to start with). Only just been given a diagnosis and only just been started on meds last week! ......my advice would be, don't give up! If you feel that there's something wrong then keep going back until you get some answers. Good luck and hope you get some answers soon xxx

  • Hang in there missjupey and try to keep strong. I know it is difficult but if you read some posts you will see it takes years for some people to get a diagnosis but others not so long, I was called a "neurotic hypochondriac" by one doctor but told him he did not know what he was talking about, went to another doctor and got an almost instant diagnosis, treatment and it was not loo long before I was in remission and able to enjoy life so hang on in there make sure you go for the tests that you are sent for and fingers crossed you will know for certain soon. :-)

    Madmagz

  • Hi missjupey,

    Yep I had years of testing and waiting...seeing different people, not always very supportive people too. Have a quick look at my profile if you've got time - I've tried to summarise all the experiences I had from first symtpom to diagnosis and how I coped etc. Might see some things there you recognise. Half the symptoms I told my doctors about they seemed perplexed by yet when I came on here and spoke to other sufferers it seems that we all have very similar progression of symptoms...this place helps you feel like you're not on your own.

    Hope things improve for you soon :)

    xxx

  • I had protein in my urine for a long time, nearly a year. i had numerous tests and was told all the time that there was nothing wrong with me,even though i was swollen all over my body. I was eventually diagnosed with lupus and FSGS which is Focal Segmental Glomerulosclerosis. which is protein leaking from kidneys in to the blood stream. google for further information. Your kidney is like a sieve leaking protein. you need a biopsy on your kidney to kind out the cause of protein leakage. Hope this info is useful. Good luck.

  • Jamaican people have the highest incidence of lupus in the world 1 in 250 people mainly women will have it. you may have to insist on going to a lupus specialists hospital st Thomas in Westminster have a unit that treats lupus. a year is a long time but on average it takes most people 7 years don't give up and big hugs

  • Jamaican people have the highest incidence of lupus in the world 1 in 250 people mainly women will have it. you may have to insist on going to a lupus specialists hospital st Thomas in Westminster have a unit that treats lupus. a year is a long time but on average it takes most people 7 years don't give up and big hugs

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