Can anyone point me in the right direction please?

[vix66]

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.

Thanks

Vicki

[Hidden]

Hi Vicki,

VUK have a phone and e mail helpline. If you want to get in touch we can discuss everything with you and see if we can help at all.

vasculitis.org.uk/helpline

Have you been see by a Consultant with experience of Vasculitis and has Lupus been ruled out?

Best wishes

Keyes

[Hidden]

Just looked up MGUS to refresh my memory. It can be associated with renal problems, did the nephrologist rule that out as a cause of your haematuria etc?

[vix66 in reply to Hidden]

Thanks Keyes for answering me, I really appreciate the support.

I told the registrar I saw yesterday about the MGUS, but she didn't really say anything about it. I had tests called Complement -third component-C3 and C4 and I think they were for Lupus, they were within normal range.

I just flagged most of the ones that were off on the list above.

On the ANCA screen it did say that the lab would do other tests if needed (as written above in my question). I would like those other tests, but not sure how I go about telling the registrar how to do her job, she also mentioned a biopsy of my kidneys but is reluctant as its invasive and thinks I am better to see if the kidney pain goes on its own (if its kidneys as she thought it may be a pulled mussel!

Are there specialists that deal with just autoimmune or vasculitis?

I feel like its just wait and see, if and what nasties transpire and I am not the most patient person, I think its better prevent rather than cure. As its quite obvious there is a good chance something will appear in the future, they could use me for trials, as most people don't know what they have until they are really poorly. I just want it all to go away, but it feels I have two black clouds following me around with the MGUS and the Autoimmune.

thanks again

Vicki

[Hidden in reply to vix66]

Hi Vicki,

The problem is that it is all a bit complex. You can have an ANCA associated Vasculitis but be ANCA negative and be ANCA positive but not have Vasculitis. The most important thing is to look at the whole clinical picture, bloods, symptoms, biopsies and scans etc.

Certainly C3 and C4 complements are associated with lupus but also lots of other auto immune diseases as well. Most often kidney problems present without pain, the problem with renal disease is that it is largely silent.

There are relatively few Consultants with experience in Vasculitis as its a rare disease. If your situation is complex and the diagnosis is complicated by the presence of other conditions ( such as MGUS ) then it's probably better to be seen by someone who has experience of treating and managing patients with Vasculitis. There are various clinics dotted up and down the country. If you want to send me a PM via this site with your location I can find out where your nearest specialist centre is.

Unfortunately a lot of auto immune disease requires " watchful waiting " until symptoms become totally clear. I am not aware of any medication that can prevent a susceptibility. The medications used to treat Vasculitis all come with potential risks unfortunately.

Best wishes

Keyes

[AndrewT]

Dear Vix66,

No I don't know either, what I DO know is that you are clearly feeling very anxious indeed. Can you get a referral to Addenbrooke's Hospital Cambridge? Sorry if this is about 'fifteen million miles' from where you live but...Dr David Jane is the leading expert in the field; he is also an advisor the Health Unlocked, our 'Sister Organisation'. I am quite sure that, once you have had a referral and explained 'everything' to him, then a the right treatment will be found, for you. This might take a 'couple of goes', to get things exactly right, for you but after all you have been through......

Please do see if you can get a referral and, I'm sure that we all echo this, good luck.

AndrewT

[Maggie_moo]

Hi, my story is kinda similar to yours.... After a UTI I found out that I have on going microscopic hematura (despite infection clearing). I was referred to a Urologist who carried out a CT scan which reported a Cyst on one Kidney, I also had a camera inserted in my bladder which was clear. Six months later I was referred to a Nephrologist who took a load of bloods and urine tests, he mentioned it could be Nephritis but apart from the trace of blood in the urine I wasn't currently showing any evidence in my actual blood etc to confirm this.... He was reluctant to carry out a biopsy. Prior to all of this I had been diagnosed as iron deficient Anaemic (I am a veggie but never had a problem in 25 years),'Even with iron tabs I'm still not retaining anywhere near the normal amount of Iron needed so spend my life now feeling fatigued / low etc. I visited another GP to discuss how I was feeling (I have two young children and need this sorted!!! Grrrrr), she decided to run more bloods checking for vit d + an ANCA test... The results were that the ANCA test was very slightly positive (1 year ago it was neg), lab report suggested Vasculitis and vit D very slightly under where it should be..... GP was very dismissive but as I have private insurance I demanded a referral to a Rheumatologist. The Rheumatologist carried out more blood/ urine tests only to tell me in the follow up appointment that there is nothing wrong with my immune system, the ANCA Test was now negative and the blood in my urine was so minimal it wasn't considered abnormal!!! Hang on... The Urologist basically Implied it could be the big C before I had the CT scan so took it very seriously, the Nephrologist suggested Nephritis and wants me to have yearly checks on my Kidney function and now the Rheumatologist is dismissing it all. Every urine dipstick test I've had in the last 18months shows blood!!!!...I'm confused to say the least. Friday I am paying to see another Rheumatologist who has a special interest in Vasculitis, I'm hoping he can either help me put this to bed or give me an answer to what might be going on..... Hopefully he won't confused me more. My anxiety is sky blooming high!!!! :(((

[vix66 in reply to Maggie_moo]

I hope you get it sorted out Maggie.

I will phone the number that Keyes gave tomorrow and see what they say.

When I went to see the kidney specialist I was sure she was going to tell me its Vasculitis, because that's what the positive P ANCA test pointed to in everything I read. In fact on another post on here it said if P ANCA is positive its Vasculitis. Is this true?

And if not, what other autoimmune diseases would show a positive P ANCA?

I am so fed up with experts not experting and consultants not consulting with each other. If you were making a machine you would make sure all the people who made the different parts talked to each other, so the machine worked, but they don't seem to step out their own little world in the medical profession.

I know someone who teaches doctors so I have asked her advice and hopefully she may be able to help. I cant really afford to go privately, but will sell something if I have to to pay for it (after all material things aren't much use if your not here!)

Before all this happened I was about to take out some life insurance and critical illness cover, I didn't get round to it and now I don't suppose I will get insured. Not that I am bothered about the money, but it would have helped if I could go privately.