I'm feeling a bit anxious about my upcoming appointment. I am going to get a second opinion from Dr. Monach (rheumatologist) regarding my diagnosis, treatment, everything. I feel like I have slowly gotten used to the idea of having GPA, asthma, Raynauds, etc. but Dr. Lebovics (ENT) questions if I have GPA or EGPA. He thinks it may be the latter so I wanted to get a second opinion. It seems like the experts can even have trouble distinguishing between these ANCA-associated vasculitides.
My local rheumatologist diagnosed me over a year ago. I'm thankful that she took my relatively mild symptoms seriously and sought to find an answer. I feel a little guilty for seeing another rheumatologist. I think I feel that way because I would likely start to just see him and stop seeing her (especially if it seems like he is a better rheumatologist for me).
More than anything, GPA has become part of my identity. I'm not sure how I would feel if Dr. Monach thinks my diagnosis is wrong. I wish I could know the result of my appointment now. I think the waiting and wondering is making me feel anxious but why? I know that either everything looks good (right dx and treatment) and I keep the course or everything needs to be tweaked (not quite the right dx and adjust treatment) and I develop a different course. I'm worried that there will be something worse that comes from this appointment. I asked my ENT if he would rather have GPA or EGPA and he said, "neither but it's better than cancer". I appreciated his honesty. I know it will work out one way or the other. I'm an impatient person (and a bit of a worrier when it comes to these things). On a positive note, he thinks that the methotrexate is keeping the disease at bay (whatever that disease may be).
In case you're wondering...
Diagnoses:
Dx vasculitis 9/2013; specific Dx GPA 1/2014
Dx asthma 7/2014 (late occurring asthma - key feature of EGPA)
Dx Raynaud's 7/2014
Dx migraines 9/2014
Symptoms at Dx:
Joint pain
Fatigue
Allergies/postnasal drip/allergic rhinitis, paranasal sinusitis
Tinnitus (but my hearing is very good)
Cold/numb/tingling fingers (Raynauds)
Dry eyes, excessive tearing with poor quality tears
Dry mouth
Nasal/facial pain
Migraines
Acid reflux
Shortness of breath on exertion
IBS
Blood test dx for GPA:
Positive C-ANCA and PR3 (indicates GPA generally)
Negative P-ANCA and MPO (indicates EGPA generally)
Negative for eosinophilia (I think so but can't recall) (indicates EGPA)
High Sed Rate
High CRP
Positive ANA (I think)
No lung or kidney involvement (clear urinalysis/blood work/scans)
No biopsy (nothing in kidneys or lungs, unlikely to get a positive biopsy in upper respiratory tract)
Negative blood test for Sjorgrens
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