whats wrong?

I have had lots of blood tests that are out of normal range or positive.

I have been pushed from piller to post and seen haematologist, kidney specialist, and now waiting to see a rheumatologist. I know non of my results are very low or high but they are all out of range and lots of them. It seems strange that they have ranges if they are not taken notice of. I think the problem is that the doctors don't speak to each other so I hope someone can point me in the right direction of who to see or ask to see.

TESTS

Postive ANCA

Positive ANA homoganos pattern

Diagnosed with MGUS due to lambda paraproteiaminia

Serum bicarbonate low under normal range 20mmol

serum folate low under normal range 4.6ug/l

serum albumin low 36gl

urine creatinine 5.8 mmol/l

ESR 23

RF 20iu/ml

ALT 8

GFR 71

symptoms

Both my legs hurt a lot, especially at night. Its like tooth ache in the legs from my groin to my toes.

Pain in my right side around my kidneys ( kidney specialist says the protein and blood in my urine are not a worry and doubts the pain is my kidneys)

night sweats (I put that down to my age I am 49)

tired all the time

eye sight deteriorating (again put it down to age)

I also have cold urticaria (I react badly if I get cold under 16 degrees with a rash, swelling and burning, I avoid the cold)

Any ideas please?

4 Replies

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  • Hi Vix,

    Did you phone the VUK helpline to get signposted to a Consultant with experience in Vasculitis to help get to the bottom of this?

  • Unfortunately the being "out of range" doesn't provide the answer to "Why?" - it can be a very complex thing working that out. Especially when it is an autoimmune problem where there are not that many people who have the necessary experience to fit the jigsaw pieces together, especially if there isn't a corner piece to work from. Funnily enough, having a "positive" test sometimes means it rules something out rather than ruling it in. If it is an autoimmune problem then the night sweats and fatigue are probably that - not necessarily your age at all.

    I know what I've said isn't particularly comforting for you when you want an answer but I'm being realistic. There may not even be a plain language answer and label for you because many such things are composites, overlapping symptoms between "labels".

    Keyes suggestion is very sensible - seeing a group with the right expertise is important. Once upon a time the NHS would have admitted you to hospital and there would have been a conference between people from all the different areas who pooled their ideas. That only happens in a few rarified departments these days unfortunately. But the VUK helpline can help you identify the nearest appropriate department. So do give them a call if you haven't already.

  • Hi

    Thank you both for your helpful advice. I will call in the morning before I have my appointment with the kidney specialist.

    I have done all the leg work, demands and research myself so far. My doctor, although good, doesn't know what's wrong and just sends me to different consultants.

    A few months ago I obtained access to my health records and test results which has helped me keep on top of things. I could see when the ANA started to be positive 3 years ago and nothing was done, there were other things too that were flagged but not followed up on.

    Up until a month ago I could see all my test results, but for some unknown reason now my access seems to have been restricted. Its very strange as the ones I can't see just happen to be the ones that are positive or off. My doctor or practice doesn't seem to know why this has happened and have told me that they will email me anything I can't see. Its very frustrating and has me questioning why.

    I will keep you posted on what I find.

    Thanks again

  • Hi Vix,

    Certainly with the positive ANCA and ANA the rule out should be Vasculitis and Lupus. Unfortunately you can be positive for both and not have either illness. The important thing is to see someone appropriately experienced to rule things in or out definitively.

    It's difficult for us to say much more on here. Please do phone or e mail and we will do what we can to help.

    vasculitis.org.uk/helpline

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