Waiting to get a second opinion

[lag713]

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

[lag713]

I already feel better. :)

[NikkiNicole]

Our stories sound so similar. The symptoms we had. I was only positive for PR-3 antibodies in my ANCA testing, My ESR has been high and my CRP was moderately high. I did have a spot in my lung that was positive for granulomas when they biopsied it but then it has since healed. I still have sinus and nasofacial pain, I get tingles all over my body, my eyes burn daily ... it's sooo eerily similar. I had and still often have rhinitis, sinusitis, conjunctivitis, fatigue, joint pain, migraines, IBS, reflux, etc.
I do hope that you get the answer you are looking for.
Knowing is always better than not knowing.

[lag713]

Eerily similar describes us well. Most people on the forum experience this disease in similar yet unique ways but it seems like we're two peas in a pod. I'm looking forward to whatever answers come. You're exactly right that knowing is better than not knowing. I hope you're doing well and that remission is just around the corner for you. Maybe that is a bit selfish though because your remission might mean that my remission is just around the corner too? :wink1:

[mishb]

I think I can say that our symptoms and diagnosis sound the same too.

I was also diagnosed with Mixed Connective Tissue Disease which incorporates Raynauds, Lupus and RA.

I was fortunate enough to have a positive sinus biopsy result for Wegeners. I have positive C and P ANCA so a little bit of MPA as well, however I was advised the RA can cause this test result.

Good luck with the second opinion. I hope it has the answers you seek

[lag713]

Thanks Michelle! How would you describe your biopsy? I haven't asked for a biopsy because it seems a bit scary. I've been scoped from my nose to my upper lungs a couple times. It was simple enough.

[mrtmeo]

I have read in the literature all your symptoms with GPA.
Did the drs say why they dx'd you with asthma or did you have asthma prior to GPA dx?

[lag713]

I was diagnosed with asthma by a pulmonologist after having shortness of breath. He used PFT test results to establish that I had asthma and reviewed my rheumatology records and agreed with the GPA dx.

[annekat]

Thanks Michelle! How would you describe your biopsy? I haven't asked for a biopsy because it seems a bit scary. I've been scoped from my nose to my upper lungs a couple times. It was simple enough. My sinus biopsy was not bad at all. My ENT did it right in his examining chair with a topical anesthetic, on the spur of the moment, no advance planning for it. There was some pain and discomfort but not a lot, and it caused a nosebleed that lasted for a few minutes. Others may end up under more sedation or in a hospital setting, I don't know. My results came back positive for Wegs, although it's often said that nasal biopsies are not as reliable as those from the lungs, which is a more involved and scarier procedure. But if you don't have lung involvement, I don't think they'd do it there. Anyway, you should probably go ahead and get one for the sake of possibly getting a definitive diagnoses. There's nothing to be afraid of. I should think your docs would want to do it without your having to ask for it.

[lag713]

Thank you for describing your experience, Anne! I really appreciate it. My ENT hasn't suggested that I need it. I will ask about it next time I visit (now that it doesn't sound so scary).

[annekat]

Thank you for describing your experience, Anne! I really appreciate it. My ENT hasn't suggested that I need it. I will ask about it next time I visit (now that it doesn't sound so scary). Well, I hope I'm right, since every situation is different. My samples were actually taken from the area of the nasal septum, where there was a perforation in the bone, and I'm not sure whether he took any from deeper into the sinuses. I'm sure Michelle will weigh in on hers, too.....

[renidrag]

I am sure you will like Dr Monach, I see him also. Are you able to take previous test results to your appointment? I'm sure that would make his opinion quicker, but would not be surprised that he would order his own. Wonderful place, good luck. When is appt?
Dale

[mishb]

My biopsy was done in day surgery under a 20 minute general anaesthetic.
When I woke up my nose bled a little and they packed it with yellow gauze stuff.
I had no pain whatsoever but it was a little uncomfortable sleeping because they told me not to lay down for the first 24 hrs.

A sinus biopsy is not always conclusive for WG, in fact most cases come back inconclusive.
Thankfully for me, they managed to find one small granuloma in the 2 pieces they took from both sinuses.

[lag713]

Thank you for sharing your experience, Michelle! I'm glad the biopsy went well and came out positive so you had some conclusive answers.

I'm looking forward to meeting Dr. Monach after hearing your recommendation, Dale. I sent over my records so I hope that helps inform him. Thank you for the well wishes and good luck with the incoming snow! I'm tired of it too!