My wife got busy

[Carol]

So often we hear about nose specialists not diagnosing something more is going on than just bad sinuses. My nose guy wanted me to have surgery, surely in their training they are taught about Wegeners. My treament would have started alot earlier if he had alerted the Doc's that something more serious must be happening.

[Sangye]

In their defense, most MDs (even ENTs) are very unlikely to ever see a case of Wegs in their practices. (Only about 500 new cases are diagnosed each year in the US.) Most of us don't present with straightforward symptoms that began suddenly and therefore would be easier to identify as a syndrome. We usually come in with a collection of wide-ranging symptoms that developed over time, each of which could be due to a long list of diseases or conditions. A common phrase physicians are taught in diagnosis courses is "If you hear hoofbeats, don't think zebras." In my own schooling, we were taught this as well. We learned about Wegs on a "short list" of diseases we would never ever see. When my doc dx'ed me, I had no memory of Wegs.

I think the only people who have a good chance at being dx'ed quickly are those who present with lung hemorrhage, or kidney failure, or saddle nose, or subglottal stenosis, or obvious lungs, kidney AND sinus involvement all together. Only a small handful of diseases can cause each of these.

Of course, those docs who ignored a radiology or pathology report that mentioned Wegs have no excuse. That's just sloppy medicine.

[JanW]

I agree with Sangye. What got my rheumy to sit up and take notice -- really take notice of the recommendations on the radiologist report that my pulmo had essentially ignored -- was as plain as the nose on my face. This led him to immediately go from "Wegener's -- wow you are really talking about an exotic disease" to "you probably have WG or sarcadoisis, let's run tests immediately." I wasn't presenting with any symptoms other than my aching ankle and abnormally high RF, ESR and C-rp. Considering that most ENT aren't going to order that kind of blood work for their patients, I'd be surprised that they'd ever catch WG at all. My pulmo had never seen a case and she's been practicing for 20 years.

And for what it's worth, even SS doesn't necessarily get put down to WG...the first thought my old ENT had was trauma from intubation (which I've never had), which accounts for this kind of scarring in the majority of patients that are middle aged. And the first thought my new ENT (my surgeon) had was sarc, which is much more common, especially in blacks. In some ways it makes sense that the radiologist and pathologists flag this, because they are just running your tests against a set of conditions for a particular disease without the 'noise' of having clinically examined the patient. Therefore, their own biases aren't going to get in the way.

[patricia]

Hello ad wecome. I am new to the group also. I have had wg for 10yrs now. Im on 10mg of predisone it is working well fo me so far. I have been doing rituxin infusions for the last 4 yrs. I just finished my second round on March 30. I get it done only once a year. It works for me. their are some side affectes. I am having fatiage really bad right now but I am feeling better each day. Hang in there. I'll pray for you. Take care

[elephant]

Wecome patricia! Have you been on prednisone for 10 years straight? What other medicines did you have to trial and error before you started the rituxin? Glad it is working for you.

[Empty bucket]

Hello ad wecome. I am new to the group also. I have had wg for 10yrs now. Im on 10mg of predisone it is working well fo me so far. I have been doing rituxin infusions for the last 4 yrs. I just finished my second round on March 30. I get it done only once a year. It works for me. their are some side affectes. I am having fatiage really bad right now but I am feeling better each day. Hang in there. I'll pray for you. Take care

Thanks Patricia. If you get rtx once a year how many infusions do you get and how far apart? How much each infusion ? Can you tell me about your side effects ? Anybody else who is being treated with rtx please chime in. I start rtx on Monday

[Dumpy]

I'm sorry that you had to meet all of these very kind and grateful people on this site because that means you have meet our other BFF but you will find a wealth of knowledge here and a lot of good people.
I live just North West of Baton Rouge in Central. I was diagnosed with WG in Jan 08. I see a Pulmonoligist in BR at Baton Rouge Clinic and when I was searching and trying to find out what was wrong with me I also was seeing a Reumy at the same clinic. It was that the 2 Docs decided that the Pulmy would be my quarterback. The ENT that I see does surgery at OLOL but his office is in Mandeville but he is a really great doc.
The closest WG Specalist to use is in Birmingham, Ala. at UAB. I went in Oct. 09 and was one the best things that the nags on this site could have done for me. It was really worth the effort and piece of mind to know for sure that the treatment I was getting was the right treatment.
If you need any help with Doctors names and phone numbers let me know. Maybe one day we could meet.

[Sangye]

. I went in Oct. 09 and was one the best things that the nags on this site could have done for me.

Chuckle chuckle.

[elephant]

Thanks Dumpy, so glad us naggers are doing our job. I have to agree with you Dumpy, I felt the same way. I am excited to see my Wegeners specialist in June. Call me crazy!

[Sangye]

Empty Bucket, I just finished my 2nd round of rtx (4 weekly infusions). The first one was in October. I started the thread "Rituximab Round Two." There's some good info on it, if you can wade through our excess silliness and side-track conversation. I do still add info about how the treatments have gone on that thread. Also, Jan started another thread called "Rituximab" recently. There are only a few of us who have tried rtx. So far so good.

Each time I see my Wegs doc at JHU he's more optimistic about rtx as he sees widespread successes.