[vicki66Participant]

I have not had the greatest experience with doctors lately, in fact ever actually, and I am not sure what is going on. I feel pretty ok at the moment but that’s not always the case. My kidneys hurt a lot, they ache about 60% of the day with the odd sharp pain that takes my breath away

I have a condition called cold urticaria that developed last year. I react badly to the cold (under 16 degrees) with a painful rash. After some blood tests due to the urticaria they found free light chains in my blood, a positive ANA and a few other things. I was sent to a haematologist and diagnosed with MGUS 4 weeks ago. He saw me for 10 minutes, then discharged me from his care back to my GP, with no info, no explanation and no report sent to my GP as of yet, but told me I would probably be monitored every year by my GP and not to worry as MGUS has no symptoms? Not sure most of you will agree!

I had a urine creatinine test of 5.8 mmol/L that said ‘refer to nephrology’ so off I trotted to see that specialist this week. I have also have had pain in both my kidneys for several months, but scans are normal and function is 72 GFR so not that bad. She wasn’t concerned about the 5.8 level.

I had some blood tests before I saw her and one came back as positive, it was the cytoplasmic ANCA screen, which can mean vasculitis (obviously that’s a worry as it’s an awful thing to have). She said if I had that I would be really ill and have more symptoms. She had no idea why my kidneys hurt, but said that she would confer with the other consultants and to come back in 2 months and see what happens in the mean time.

I questioned the positive ANCA and she said I had an auto immune disease, but it hadn’t developed yet so don’t worry. As for the pain she said to take paracetamol, but if it’s kidney pain, they wont work? (Very strange)

Frankly I am fed up with being told not to worry; of course I am bloody worried, who wouldn’t be? I have two clouds hanging over me, maybe they will develop, maybe not and I am not sure what to do.

Is having an undiagnosed autoimmune disease normal with MGUS? Any ideas who I can see or annoy next or find out which of the 80 autoimmune diseases it could be or what I can do?

Thanks in advance

• This topic was modified 9 years ago by  vicki66.
• This topic was modified 9 years ago by  vicki66.
• This topic was modified 9 years ago by  vicki66. Reason: text is coming out all wrong with symbols
• This topic was modified 9 years ago by  vicki66. Reason: odd wording

[annlynnParticipant]

cant really read what your posting sorry. ann

[vicki66Participant]

I have sorted it out now 🙂

[Author]

Posts