Hi all I hope your all well at the moment it is a while since i posted - I was hospitalised wit Kidney pain in May and when they did a scan they found inflammation that was too much for it to be an infection,and a thickened Ureter, I have constant blood in urine and wee out blood clots. They said it isnt typical presentation of cancer so im relieved. I have ben collapsing at home with severe dizziness and giddiness and kidney pain but been able to get on with it apart fom the tiredness,however I had a biopsy of the kidney ureter and bladder and it seems to have triggered a major relapse on whatever is going on - bleeding in the kidney,horrendous pain (i would swap and have childbirth twice over) and blood clots trapping the ureter, i was taken by ambulance as i couldnt breathe and the pain was unbearable - it took 5 days in hospital and antibiotics to help with the inflammation before i could come home. A major collapse in hospital where my colour drained and my lips went blue so at least they have seen an episode i suppose. The doctor initially said that it was possible wegeners,bergers or amyloids, but now they have just talked about mixed connective tissue disorder as though that is something i already have and think it is all linked - im very scared for the future and looking like im lazy as i feel like im in the middle of having flu - im so tired and no energy and in pain all the time and my kidney literally bounces in my side and goes in to spasm - has anybody else had this? I think immunosupressants is the way forward and i hope they will start them soon as i really need a bit of hope at the moment, even my eyesight has gone all blurred again,and i just feel like im going backwards. it shouldnt be too long for the results now i know i have to be patient, but my consultant said once you have one auto immune disorder the likelihood of having more is pretty certain. Im hoping the biopsy gives answers but he doesnt seem confident it will, and after a 7 year journey around the system to get my diagnosis of hughes im worried i have another fight on my hands to get answers to this and another diagnosis and i dont have the energy for it and im worried for the future x
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