[cestrian42Participant]

About 8 months ago, it was discovered during a routine health check that I was spilling 1.17-1.59grams of protein a day in the urine as well as microscopic traces of blood. I was referred to a nephrologist on a routine referral and after waiting so long for my appointment, he has given me a speculative diagnosis of IGA nethropathy due to my clinical presentation. My kidney function is good and holding steady at 90 but they are concerned about the leak and are treating with strict blood pressure control and low salt, low protein diet. I have been referred for a renal biopsy as well.

On my most recent bloods results, which arrived alongside my consultation notes last week, it stated for electrophoresis – “Possible paraprotein detected. Immunofixation required for confirmation. Results to follow”.

I am quite unnerved by this. I don’t see my consultant again till August. I rang and spoke to the consultant secretary today and she said the result was back and I would hear when it’s been looked at. Is it possible that my nephrologists speculative diagnosis is wrong and myeloma has been detected? The consultant seemed surprised by how exhausted I was and said protein leakage might make me a bit tired but I literally have no energy. I also ache all over some days. When I add all this together with the kidney issues, it just seems to track. I just feel like I’m wasting time waiting for months now and every day I feel like I’m getting worse.

Has anyone had any experience of kidney issues like Iga nethropathy turning out to be myeloma?

• This topic was modified 5 years, 5 months ago by  cestrian42.
• This topic was modified 5 years, 5 months ago by  cestrian42.

[ellenModerator]

Thank you for posting on the Discussion Forum, I am sorry that as yet you have not had a response – I suspect that as your query is a very complex one – other forum users may not have experience of the issue you describe. I hope that you don’t mind if I try to clarify things for you. My name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK.

I hope that by now you have had a chance to speak to your nephrologist regarding the results of the further testing for paraprotein. If there is any concern that they may be a diagnosis of myeloma – then a referral to a haematologist would be appropriate – if this has not happened it is perfectly reasonable to ask why.

There can be some similarities with myeloma (and other associated conditions) and IgA nephropathy and the investigations you are having will help your doctor to identify the cause of your symptoms. Some myeloma patients can experience kidney issues for a variety of reasons – but without knowing your results it would be impossible to say with any accuracy whether the symptoms you have are related to either or both, hopefully the results of the kidney biopsy will provide clarification.

It can indeed feel overwhelming whilst you are trying to get some answers, particularly when you feel as unwell as you do. It may be worth getting in touch with your consultant’s secretary again to explain how concerned you are in relation to getting a diagnosis, and that your symptoms seem to be getting worse in some respects. You could ask if your investigation appointments and your clinic appointment could be brought forward at all. Your GP may also be a source of support for you.

I hope that this has been helpful but if you have any further questions, that I and my colleagues may be able to help with, or you would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332, or alternatively you can email directly to askthenurse@myeloma.org.uk

Ellen

[Author]

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