Well - I went to the dreaded Hospital appointment this morning... and

I will keep this concise and to the point...

I was dreading the appointment today as I've not made much headway with the last ones...

BUT - this time, they have sprung into action... It wasn't long before there were 3 Doctors in the room... My urine showed I have protein in it!!! (does anyone know what that means?) - The sample has now been sent off for further tests. The Dr really listened to what I was saying (I had my list with me!) - I had only rattled of the first few and she did a double take when she realised how much weight I have lost she looked paniced.

IShe has checked me all over for lumps and bumps boobs arm pits tum. Asked about bowel habbits and eating (my sister died of cancer of unknown primary aged 50 6 yrs ago and my Mum of the same 4 months before her) but nothing showed and nothing unusual happening with me bodily functions!!!

She asked about my persistant UTI's (I have another now) - They wanted to admit me!!!- which I couldn't do as I'm a single parent with a 14yr old with special needs. She has said that they may still need to do that, but I can plan round it. I was sent me for loads of bloods (9 tubes) - a chest x-ray - and they've ordered a full body MRI asap.

I have to go back in 4-6weeks to see them again - but they will call me before if they need to. I know they are making sure I don't have cancer - but they have said that this is part of finding out what is wrong as I definitly do have something very wrong... So - me being positive this is an elimination process. But the only thing I'm really worried about is my kidneys as I have aches both side in my back.

The immunologist that was called in was very clear, they are going to find out what is causing this but it may take time.

This is the first time I've felt I've me listened to and HEARD...

Dear God - I hope it isn't cancer...

I'm having my kidneys and bladder scanned on monday - and also seeing a urologist the week after...

Xx

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  • Hello i cant tell you much but protein leaking from the urine it all depends how much thier shouldnt be any protein leaking from the kidneys i had this myself and they thought it was going into kidney diease turned out to be cross contamination so i didnt really have it.

  • I think it is kidney disease and I think you will be OK. Cyclophosphamide is not pleasant (if you choose that - there is an alternative) but it works. It will take a while and you are going to need help with your child - but you get get there.

  • I mean: will get there

  • Good luck

  • Thank you - I think there is an issue with my kidneys...

    I have a strogn feeling thats what it is - don't feel I have cancer.

    Does anyone follow that logic??? :/

    My protein was between 1 and 2 and definitly there as they had me do another pee to check. She said if it had been 4 she'd have been very worried...

    I'll keep everyone posted on this - as all our stories matter - help others understand too.

    Fab site. Xx

  • Hi Adamine

    I had my first nephrologist appointment today after rheumy finding protein in urine at last visit, plus my blood tests showing more active lupus than before. I saw a lovely doctor who explained things well, & answered all my questions.

    So try not to panic, if that's possible! Although I know how scary it is for you. I was thrown into a complete melt down when they told me I might have lupus kidney damage. But after a bit of research I realised it is treatable, & the early they catch it the better.

    It's great that you are being listened to at last, & with all these tests you will quickly get the help you need. This is the stuff the doctors are good at, so let them look after you & follow all the advice you're given. Which I found was a lot to take in after my appointment today. But the clinic nurse went through it again with me step by step, so that even my frazzled little lupie brain could understand.

    Have a look at my recent post about nephrologist visits, as I got some good responses. And please get in touch if I can help you in any way.

    Take care, & try to believe that you are on the way to a better lupie you. I am working on convincing myself of this right now too. Love & hugs. X

  • Thank you...

    I will check you posts out. This site is a god send. Before it I had begun to think I had lost the plot!!

    Hugs to you to - you can never have too many... xx

  • Dear Adamine,

    Don't worry too much, I had protein in my urine some time back, much to my consternation not the doctors, it self righted itself on the next test! I know you feel worse because you have responsibilities outside your own health but, deep breath, soldier on, it will all come out in the wash!

    With a very big hug and love

    Kath

  • Hi... I hope you don't mind me asking... Did/do you have a lot of UTI's too?

    Xx

  • Following this thread with interest. Have had blood in urine for 4 weeks and am on my 3rd batch of antibiotics (strong). Abdo hurts. Pretty worried. Am booked to have a cystoscopy next week but think a kidney scan wpuld show more. :-(

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