Still in diagnosis limbo

[annekat]

I'm just amazed that I'm one of the ones helping people and being supportive, after all the uncertainty at first and figuring out how to cope with it all. I certainly don't know it all, though. Far from it.

Terri, I wish the best for your new GPA connection! What a shame that she got worse and you couldn't talk to her. But I'm hopeful that she'll get better and you two will have lots to talk about.

[drz]

Ideally it is very desirable to have a GPA diagnosis confirmed by a biopsy and generally this is done but some times this isn't possible or doesn't happen and diagnosis is made by ruling out other problems and history of clinical symptoms and related lab work. Biopsies generally work well for kidney and lung involvement most of the time but are not as easy or definitive when the GPA attack is in some other part of body (hearing mechanisms, eye, sinuses, brain, or other organ hard to reach or less likely to yield a definitive biopsy. So some times treatment is begun and continued without having confirmation by a biopsy. Our drugs used for treatment can have serous side effects but losing ones hearing or vision is also a serious issue so some times a more aggressive treatment is the prudent course of action. Here is where I would also recommend consultation with an expert who can help evaluate the situation and give advice on how to proceed.

[Terri]

Thanks again. I'm confident she will pull through and I will have a new weggie friend to talk to and one that I can give a hug to if needed. Something that I could have used more of. Have a great day everyone!

[annekat]

Thanks for that explanation, drz. I had been going around saying that a sinus, or nasal septum, biopsy was the easier way to get dx'ed than say, a lung biopsy. This may be true from a physical standpoint, since it doesn't necessarily involve a trip to the hospital, etc., but I didn't realize they were so less likely to be definitive. I guess I was lucky mine did the trick.

[Marci]

Annekat, guess I was lucky too that my nasal biopsy and ANCA showed I did have GPA. Terri we'll all keep your new GPA friend in our thoughts and hope they can get this under control. Her husband must be so worried.

Terri, if you live in southeastern PA you probably aren't too far from us WG's in Ohio.

[BookNut]

Ideally it is very desirable to have a GPA diagnosis confirmed by a biopsy and generally this is done but some times this isn't possible or doesn't happen and diagnosis is made by ruling out other problems and history of clinical symptoms and related lab work.....So some times treatment is begun and continued without having confirmation by a biopsy.... some times a more aggressive treatment is the prudent course of action.

Thank you for saying this. If the biopsy is inconclusive, I will see both my allergist and rheumy again for their opinions on how to proceed. They are both very intersted in my case, and I am willing to give their route a trial. I still hope for definite confirmation, as that will help me feel more confident going forward. I really appreciate your thoughtful comments.

[annekat]

Well, it's good you are getting a lung biopsy, Booknut, since there is more chance of it being conclusive. I'm glad you were pushy and got an earlier appt. with the pulmonologist!

[drz]

Annekat, guess I was lucky too that my nasal biopsy and ANCA showed I did have GPA. Terri we'll all keep your new GPA friend in our thoughts and hope they can get this under control. Her husband must be so worried.

Terri, if you live in southeastern PA you probably aren't too far from us WG's in Ohio.

I bet she will be very appreciative too of finding a fellow Weggie to discuss the Wegs roller coaster ride.

[drz]

Well, it's good you are getting a lung biopsy, Booknut, since there is more chance of it being conclusive. I'm glad you were pushy and got an earlier appt. with the pulmonologist!

According to the John Hopkins site lung biopsy usually involve a larger amount of tissue which increases the changes of confirmation if Wegs is present. Kidney samples are smaller but usually damage to kidney is more pervasive I guess and thus easier to find. Other parts of body tend to be more hit and miss. It they confirm the diagnosis it is great for you. If the sample they got didn't confirm it, it might mean they didn't get the right tissue or enough tissue to find it or that the damage hadn't yet affected that particular part of your body. It doesn't mean you don't have it.

[BookNut]

. If the sample they got didn't confirm it, it might mean they didn't get the right tissue or enough tissue to find it or that the damage hadn't yet affected that particular part of your body. It doesn't mean you don't have it.

Darn! I was hoping for a definite answer. hard to know what to hope for....a definite diagnosis of WG, or a negative result that can't be depended upon! Makes me wonder now if I should just go ahead with the Imuran and forget the biopsy. But, I guess I will at least give the biopsy a try.