I wonder if anyone can throw any light on any of it for me or point me where to go for help?
I am worried and I don't seem to be getting anywhere. I feel like a hypochondriac and maybe I am over reacting, but I have been let down before medically several times and I don't want it happening again. There are a few medical things I have been having investigated. I have had some more blood tests back and seen the kidney specialist, but I am really confused with what's going on as I feel they are missing something. The specialist I saw is at a loss to what's wrong and is going to confer with some colleagues and send me a letter with a copy of the notes. I have made an appointment to go back in a couple of months. She says my kidney function is normal at 72 and the blood in my urine isn't enough to be overly worried. She suggested the pain I have could be something else. She says that although the results suggest vasculitis this condition is very serious and that I would have other major symptoms, like fever and feel very ill, which I don't. She also said that although I this P ANCA positive in my blood it doesn't mean I have an auto immune disease, just that I will be more likely to develop one in the future.
I'm tired of being pushed around from one consultant to another without them consulting with one another. I know I should be patient, but its just been going on for so long. I have also seen a haematologist, due to paraproteins in my blood, he said I have MGUS and that my own doctor would test me yearly to check on it, (again like the kidney specialist said about an auto immune disease), it may develop into myloma, it may not.
My only symptoms are; I have constant pain (a dull ache, but sometimes its a sharp pain) in my kidneys, mainly my right one, this all started several months ago. I had a scan last week and my kidneys, liver and spleen and all looked normal apart from a small cyst on my left kidney. They seem to look and function normally.
I have pains in my legs especially at night. I am tired a lot, but my husband says I am always like that, but I often feel very drained. I have cold urticaria diagnosed last year (I react cronically to the cold, below 16 degrees, with a rash, like it feels like chilblains, its nasty). I have a few other things, but I don't think they are relevant to anything important like serum folate, a bit low at 4.7 ug/L (flagged) and a constant itch on my shoulders which they say is Brachioradial pruritus I have had injections and it has improved it by about 60% (that took 10 years to diagnose!).
Tests as follows, this is what I can see on my medical notes I have access to.
Urine protein - albumin trace present
urine protein - 0.07
urine protein/creatine ratio
urine creatine 5.8 mmol .......it says 'refer nephrology'
serum ANA pattern - homogeneous
serum ANA - medium positive (this was weak positive a year ago)
DNA & ENA normal
ESR 23mm/h (was 8 a year ago)
paraprotein level 2g/l but in the notes several times its flagged with 'lambda paraprotein band detected in mid/ slow gamma region'
Proteinase 3 antibody level 2U/ml (says normal if below 2 U/ml)
Myeloperoxidase antibody level 2U/ml (says normal)
Cytoplasmic ANCA Screen (this is flagged)
This is what it said.....
Comment: (SK1381) - arranged by secondary care , P ANCA positive, If you have strong clinical indications for, an ANCA associated systemic vasculitis or if, this result is not consistent with the, patients clinical picture, please call, the laboratory on 01233 616716 and we will, do some additional testing., Sample sent away for PR3 and MPO antibodies.
If anyone can help I would really appreciate it.