Still in diagnosis limbo

[Dirty Don]

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.

Discretion (on behalf of a possibility of WG) is the better part of valor...what! Hmmmm, done with coffee...I need a snack!

[mishb]

My hospital team wouldn't even start any medications/treatment without a biopsy first. (I was living off aspirin at the time - which did help a bit).

Thankfully they found what they were looking for in a nasal biopsy.......even though they said it was very small and could have totally missed it if they took a different tissue sample.

I will have my fingers crossed for you, BookNut, for a definitive answer

[annekat]

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.

I think you should get the biopsy. Then if it is inconclusive and you are still having problems, and your rheumy still thinks you may have WG, go ahead with the Imuran. That's my humble opinion! I don't know what's worse, knowing you have Wegs or knowing you have something and not knowing what!

[drz]

I think you should get the biopsy. Then if it is inconclusive and you are still having problems, and your rheumy still thinks you may have WG, go ahead with the Imuran. That's my humble opinion! I don't know what's worse, knowing you have Wegs or knowing you have something and not knowing what!

Sounds like a good plan. For me having something wrong and not knowing what is a bigger problem. It could be something serious like Wegs and even kill you before they figure out what it is instead of what it isn't. Diagnosis is an art and just like any other skill so it depends a great deal on skill of the practitioner.

[Marci]

Sounds like a good plan. For me having something wrong and not knowing what is a bigger

beproblem. It could be something serious like Wegs and even kill you before they figure out what it is instead of what it isn't. Diagnosis is an art and just

like any other skill so it uodepends a great deal on skill of the practitioner.

.



I agree. Biopsy sounds like a good plan.

[annekat]

I wish they could get things moving faster for people. I know your pulmonologist appt. is pretty soon, Booknut, but don't know when the biopsy might be, or how long to get the results. Everything happened pretty fast for me, once we knew we were looking at possible WG. Maybe because the population is less dense in most areas of the west coast, appts. are easier to get. Same reason we have so few WG specialists here, though. But this is not a tiny community, lots of people seeing doctors here.

[Terri]

Now I am scared. The friend I talked about recently being diagnosed.....she is not improving any and her Dr. (pulmonary) says both lungs are damaged and there is nothing more they can do for her. I feel this is due to the fact she was misdiagnosed in Aug. when they said she had pneumonia. She is on a ventilator and they say she can only be on that safely for 7-10 days before she would most likely get pneumonia for sure. Either way, they are not giving the family much hope. I've asked her husband to consider taking her to Cleveland or even Pittsburgh where I was diagnosed but I'm afraid it is too late. I just can't believe there is nothing else they can do!!! Any ideas will be greatly appreciated ASAP.

[Terri]

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

Marci, I have an Uncle living close to Columbus and I've driven there in 4 1/2 hrs. I live right on the corner of Pa.,Md. and w.Va.
There is a spot about 3 miles from my house where you are actually standing in 3 states. lol

[annekat]

I'm very sorry to hear this, Terri, and hope someone on here can offer some hope or advice. I imagine her docs could at least consult with someone at the Cleveland Clinic if getting her there is not feasible at this time. Maybe you could call the doctor you had at Cleveland and ask about this, stressing the dire nature of your friend's situation. This sounds very serious, and I'm questioning whether the docs working on her have much experience with WG and what the options are at this point. Of course, pneumonia would be terrible, and it would be nice if they could pull her out of that danger. All of us that have had lung involvement have some damage to our lungs, and I know there are people on here who have been in grave danger in the hospital and managed to make it home and resume their lives. I hope your friend can be one of those.

[rebekah]

I am so sorry to hear this. I agree with Anne about asking the doctors to get in touch with a WG specialist at Cleveland Clinic or Mayo. They might know of something to try to help her. Your friend and her family are in my prayers. I hope she’ll pull through.