Trying to learn all of this

[MINDYB77]

I went Friday to see Dr. Villa Forte at CC. She was great. She spent about an hour and a half with me. She did a ton of bloodwork, of course. One just came thru last night. So, I'm positive for P-ANCA and negative for C-ANCA. Is this normal?
I'm hoping to hear from her today but it looks like one test is still awaiting results.
My proteinase is 7.8. MPO >8.0.
She was somewhat reluctant to say that I did in fact have Weg's due to long standing lung and sinus issues. She said that it could be something mimicking the symptoms.
Thoughts?

[John S]

I went Friday to see Dr. Villa Forte at CC. She was great. She spent about an hour and a half with me. She did a ton of bloodwork, of course. One just came thru last night. So, I'm positive for P-ANCA and negative for C-ANCA. Is this normal?
I'm hoping to hear from her today but it looks like one test is still awaiting results.
My proteinase is 7.8. MPO >8.0.
She was somewhat reluctant to say that I did in fact have Weg's due to long standing lung and sinus issues. She said that it could be something mimicking the symptoms.
Thoughts?

She is the absolute best! I initially went to her because I had mixed test results like yours. Some thought I had Lyme disease, some thought GPA, others were just treating symptoms. Dr Villa Forte is not only an expert in Wegeners but also has written papers on diseases that mimic GPA.
She reviewed my extensive medical history and had my biopsy tissues rechecked. After reading my records and reviewing the various cat scans, MRI results and biopsy tissues she ruled out the other diseases and came up with the diagnosis of GPA.
I have eternal gratitude to Dr. Villa Forte and continue to see her every six months even though that means I have to travel from Chicago to Cleveland each time.

[MINDYB77]

Yes, I took my biopsy slides and she sent those off to be re-analyzed. She said the report was not detailed enough for her. She was fantastic. I know I'm in good hands. We are about 4 hours away from Cleveland.

[John S]

Yes, I took my biopsy slides and she sent those off to be re-analyzed. She said the report was not detailed enough for her. She was fantastic. I know I'm in good hands. We are about 4 hours away from Cleveland.

It took her a couple of weeks to make the diagnosis. She thoroughly went through my text results, scans and records before making the correct conclusion. She also came up with a wonderful treatment plan.

[annekat]

Mindy, yes, you are under great care with Dr. Villa Forte. I have heard nothing but excellent reviews of her.
One thing got my attention: positive p-anca is characteristic of another similar Vasculitis called microscopic polyangiitis, or MPA. I think it is more rare than GPA, but I know someone who has it. This does not mean you do, as some WG/GPA patients have positive p/anca. And anca isn't always present as an indicator; some of us have little or no positive results with the test. But if it is there, I'm sure it means something. Dr. Villa Forte will get to the bottom of this with her fine analytical skills and knowledge. Just a technical detail I noticed, and you may take it with a grain of salt. I'm no expert, and far from it. I'm just hoping you get a positive diagnosis of something soon. Best wishes.
Anne

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[MINDYB77]

Thank you, Anne! Me too!

[Khilde]

I too am seeing Dr. Villa Forte and love her, she took her time and answered all of our questions. I feel like I'm finally on the right track. I am neg. Anca which doesn't seem to matter. It's still Wegners..I have my first Rituxan infusion tomorrow, with a side of SCARED..I know it's gonna be fine. Prayers to u but I too believe u are in the right place.

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[MINDYB77]

Thank you! Prayers to you on your first infusion! I can imagine your fear, but I keep trying to focus on how it will make us feel better in the long run!