I hope I can get some help. I had a Positive Anc and Serum Titer showing some auto immune disease. I was sent to a Rheumatologist for further extensive blood work and other tests. Chest x- ray= neg; Echo= neg and PVT= neg. All the labs were neg except for the Proteinase-3 which was 47.9 , ANCA was positive. My ANCA titer was positive. For the last 2-3 years I have had on- going viruses which take months to go away. I had a tube placed in my ear 2 years ago for fluid, which helped. Swollen lymph nodes every time I get a virus, and fatigue. Since Dec. I had another tube placed and I have some problems with that ear. Have seen an ENT, CT and MRI were neg but did see something on the right side. Not sure what. Have been continually sick for the last 3 months. I have been getting worse, kidney pain but US was neg. Dry mouth, SOB, night sweats, weight loss, difficulty at times climbing stairs with very sore joints. I am very congested in my head but not with sinus issues. Some days I feel great but I can really sleep but wake every night for no reason.
The doctor I saw said I do not present as a typical Wegener's pt. Most they see are in the ICU by the time they are dx. Yikes. I look too healthy. In order to determine she will need to do a lung and kidney bx. If they come back neg then I am to go back to my PCP. I am seeking a 2nd opinion at a large University Hospital. I am fortunate to have excellent health care where I live with some of the best doctors. I will not be going back to her for a variety of reasons.
Is it too early in the disease for any other test to be positive? I actually think this has been going on for a few years but after reading about this disease I am not sure what it is. I know this is not a doctor page but hoping someone can make me feel better- in my mind.
Of course I don't understand how the Anc went from positive to neg. I guess it could be lab error but.....
thanks for the website.