I am new to all of this and still looking for answers. My dr has ran a lot of tests and suspected vasculitis or because of all of my symptoms and lung nodules. I have every symptom it seems that suggests Wegeners. (sp?) I am in California. US. If anyone could help me with these results I would really appreciate it.
Here are the only ones that showed any type of positive results. And not sure it actually means anything since they seem to show within "normal" limits?? Very confused on the reading of these ones...
CYTOPLASMIC (C-ANCA) My value <1.20 titer standard range Neg: <1.20titer
PERINUCLEAR (P-ANCA) My value <1.20 titer standard range Neg: <1.20 titer
ATYPICAL pANCA My value <1.20 standard range Neg: <1.20 titer
ANTIPROTIENASE 3 (PR 3) Abs My value <3.5 standard range 0.0-3.5 U/ml
ANTIMYELOPEROXIDASE (MPO) My value <9.0 standard range 0.0-9.0 U/ml
Any help would be greatly appreciated....
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katkatdd
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If your Consultant is relying on blood results to make a diagnosis then that is very worrying. You can have an ANCA associated Vasculitis ( there are 3 including Wegners ) but be ANCA negative.
Vasculitis is a clinical diagnosis taking many things into consideration including symptoms, blood results, imaging and biopsies.
What conclusion has your Consultant come to? Do they have experience of diagnosing Vasculitis?
There is a charity called the Vasculitis foundation in the USA, it might be worthwhile contacting them for advice.
This is all so brand new so not sure what they are relying on. I do know they want to get a biopsy of the lung nodules I have as they are growing. Basically I went to see this new Rheumotologist for Fibro symptoms. He ran tons of blood work and sent me for another CT scan because back in 2014 I was really sick and CT back then showed lung nodules. I went and had bronchoscopy done back then and the dr didn't do a biopsy only flushed the area. Ugh... So, since then only had x rays that supposedly showed nodules had resolved... But now I am wondering if they really ever did. I have been symptomatic actually since 2006 with many different things. I also have Graves and have had thyroid ablated yrs ago but still battle with getting meds right. Anyways, this new dr then said you know we have never tested you for vasculitis and because I also have a raised rash on my hands he was making the connection. He said he thought he might be on to something..... So, this is where I am at now with these results. So, with this blood work is it showing that something is going on possibly Wegeners??? I am still very confused! Waiting to hear from his office but that always seems to take forever..... Still don't understand what these labs are saying???
A biopsy is probably a good thing as it is the gold standard to diagnose most types of Vasculitis ( there are over 18 different variants ) , be aware that you can get false negatives though.
No Dr should ever diagnose Vasculitis on blood tests alone which is why I can't say if you have Wegners or not based on them. You do need further investigation. The most important thing is that your Consultant is considering it as a possible diagnosis.
Agreed! The biopsy will give the final answers I am sure. I was just so confused on how these labs go. From everything I could find or read up on I was going back and forth on weather you should never have ANY of the ANCA in your blood and any amount is considered a "positive" reading and then they look at how much is in the blood.. With most bloodwork it is usually pretty cut n dry. Either you have it or you don't. Usually things are either negative or positive. So, this was just throwing me off if that makes any sense. Lol.... But I am sure I will eventually get an answer from him. My next appt with him isn't until December.
I had a spinal tap, MRI's, Brain biopsy,blood tests all to confirm initial thought I might have Neuro Vasculitis. I guess it sometimes requires a lot of tests to confirm the correct diagnosis.
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