Still in diagnosis limbo

[BookNut]

As you may know, I am a bit skeptical of my diagnosis. Well- now both my immunologists think it IS Wegner's. I had made a decision to go to the ENT and ask about a biopsy - just so I could be more certain. Now I am confused again. He is inclined to think along the lines I was thinking. I am not sick enough to have Wegener's. But…he says some folks do have a very limited version….

To make things even more confusing, my sinuses are quite clear right now - so he says there will most likely be nothing, or very little, to biopsy, which will still leave me in limbo. So….now he has referred me to a pulmonologist to see about a bronchoscopy. The referral has been sent and they will call me tomorrow to set up an appointment.

So - once again - I am on hold.

I must say, they are all good folks and interested. Yesterday I went to the allergist/immunulogist, who thought it was likely that I do have WG, but agreed that I should get a definitive test. At 8:30 this morning the phone rang, waking me up. It is the allergist. "Do I have any problems when I take NSAIDS (aspirin and ibuprofen")". When I told her no - she said "OK - that shoots that theory. I was looking into Samter's Triad - but if you can take NSaids - that is not the problem. Have a good day". So - at least I know she is thinking. She is such a nerd - in the most complimentary sense of that word. She is like a bull dog with a bone about this diagnosis.

Meanwhile - I continue my wheat-free life at the suggestion of my PCP. Not too bad so far…

Tune in again in the next 10 minutes. I am sure the diagnosis will change. This pulmonologist will be my 9th doctor!! At this point, I truly do not care. I want a firm diagnosis. If it is WG, I can take the medicine and deal with it. If it is not - then tell me what it IS, and I can deal with that too. I JUST WANT TO KNOW FOR SURE!!!! GRRRRRRR!

[Dirty Don]

Be patient...it takes time to get a solid diagnosis & a good team...unless you do it like I did...and you really don't want to go there!

[NikkiNicole]

Hi book nut! I have just been given a tentative diagnosis of WG because of granulomas biopsied in my lung. My doc also says I'm not "sick" enough. I have rhinitis with what felt like sinus pain all last year, my hearing was muffled and I had to get tubes. Then they discovered a nodule in my lung. I had a swollen salivary gland removed, that was cancer and unrelated so they biopsied the nodule and found granulomas. Currently my sample is at Stanford Medical Center for a definitive diagnosis but I have started prednisone. I can't start my cytoxan until after radiation for the cancer. I'm not feeling any better yet, still coughing til I can't breathe. But, I hope after the cytoxan round, ill be good for a long time.
i hope they give you a final answer soon. I had my PCP, ENT, pulmonologist, rheumatologist, oncologist, ophthalmologist and saw a neurologist in the ER because the left eyebrow sank temporarily. It's been a short (to some) but long haul to me.
i also have one pupil smaller than the other. Not sure if that's related!!!

[rebekah]

I understand how you feel... my doctors had no clue what was causing everything until I was finally diagnosed with WG. At least they think that's what it is for you. It sounds like you have good doctors working around the clock to help. Hopefully they have a definitive answer for you soon, so you can start treatment and start to feel better soon. :)

[annekat]

I'm getting tired of this "not sick enough to have Wegener's" attitude. I was not sick enough to have Wegener's for 2.5 years, and then the s#*t really hit the fan! That could happen to you, too, though I hope it doesn't!

[mishb]

Not sick enough to have WG or the one that friends do - you don't look sick .....arrghh

A girl at work is in the process of trying to get a diagnosis - possible Myathenis Gravis.
She has been having some shaking episodes at work and has been sent home many times because she is just too tired.
At one stage when her legs were aching, I said, I know how you feel and told her to rest up.

Another lady at work said to me - but you're not sick anymore, aren't you better now? You must be, you take medication.
My daughter (who works with me) had to bite her tongue and said NO, she's not better - there is no cure.



It may take a while, but at least they are being thorough and not discounting it.

[annekat]

"Are you better now?".... I have to answer that one when talking to bill collectors about why I fell behind on my payments. Everyone wants to hear that you are better. Maybe you are, but if you say that, or if you look and seem better to people, that makes them think you are now better forever, and there is no longer any reason you should have difficulty with anything!

[BookNut]

I'm getting tired of this "not sick enough to have Wegener's" attitude. I was not sick enough to have Wegener's for 2.5 years, and then the s#*t really hit the fan! That could happen to you, too, though I hope it doesn't!

It is frustrating to hear that. In my case, I am afraid it is my fault. I have what some would call a "relentlessly" sunny view of things, and perhaps that has contributed to this long, drawn-out diagnosis. I give me doctors credit - as they have been the ones pushing me to make follow up appts. I had just made up my mind that I have chronic bronchitis and that I just need to make the best of it. But, looking back, I might have made too little of the three bad episodes I've had, and am perhaps concentrating too much on how good I feel at the moment. I guess someone that was in the hospital getting 125mg of prednisone via injection 5 times a day, was probably in pretty bad shape. The thing now is that my sinuses have totally cleared up, and it is only the lungs that are an issue. I am not at all short of breath. There is just a constant wheeze that sounds like a sad accordion, accompanied by the sound of rattly congestion - but is only audible upon deep exhalation. My hoarsness is gone, my sense of smell is back, and I can carry a tune again. In my mind, I am doing very well. To the doctors' credit - they don't seem satisfied with an asthma/Chronic bronchitis diagnosis. My husband, who is a severe asthmatic, is also beside himself. He insists that I breathe out deeply after I use one of my asthma meds, so he can hear. Of course, the ever-present wheeze is still there. He says that does not happen to him. His wheeze will often come back in a short amount of time - but his meds WILL clear it up for a little while. Not so for me. But again....it does not interfere with my life, so I am perfectly content to go on as is....unless it truly IS wegeners.

No matter what happens - I will be SO grateful for all the input from everyone on this forum. What an amazing group of people. Even if I am proven to only have "plain old, garden variety" chronic bronchitis, I will continue to monitor this forum so I can keep up with how everyone is doing!!

[BookNut]

Be patient...it takes time to get a solid diagnosis & a good team...unless you do it like I did...and you really don't want to go there!

Well - at least I have a good team. I just want things to be settled so i can get on with dealing with whatever I need to deal with. Sigh.... Thanks as always for the support!

[BookNut]

i hope they give you a final answer soon. I had my PCP, ENT, pulmonologist, rheumatologist, oncologist, ophthalmologist and saw a neurologist in the ER because the left eyebrow sank temporarily. It's been a short (to some) but long haul to me.
i also have one pupil smaller than the other. Not sure if that's related!!!

What a time you are having! I hope you will soon be on the upswing. I also hope you don't mind my making a little joke. Believe me, I have every sympathy for your very challenging situation. But I just had to chuckle when I read about your "left eyebrow" (so glad THAT was only temporary!!). The reason I chuckled was because I just got off the phone with my PCP where I told her that I now have so many specialists that I expect any day to be referred to a "left-eyebrow specialist"! And don't I hang up, go on here to re-read the latest responses, and find someone with a left eyebrow issue!! What a disease. Weggies are nothing if not unique! Keep posting and reading. There is SO much expertise and empathy on this board!!

[BookNut]

I understand how you feel... my doctors had no clue what was causing everything until I was finally diagnosed with WG. At least they think that's what it is for you. It sounds like you have good doctors working around the clock to help. Hopefully they have a definitive answer for you soon, so you can start treatment and start to feel better soon. :)

Thanks so much rebekah!! Just tired of waiting and not knowing for sure! This forum is such a great outlet for frustration and such a great source of knowledge and perspective!

[BookNut]

Not sick enough to have WG or the one that friends do - you don't look sick .....arrghh

It sure is frustrating. It takes personal experience to develop empathy and understanding I guess. Keep smiling is the best advice. Thanks for the support!

[mishb]

I am the same as you BookNut.

My real problem (and the reason why the people at work think I'm better) is because I'm always happy and always helpful and caring of others around me.

My daughter constantly tells me that I don't act any different than I always have - and that is why everyone thinks I'm fine. Also, when they ask how I'm feeling, I say "I'm good thanks"
I guess I don't help the doctors either because I don't winge and complain to them either.

Well, I'm not going to change ........ and I'm not going to sit around moaning and groaning (even if things hurt sometimes) - that's just how I am

Yes, Keep smiling is always my motto :biggrin1:

[Pete]

Every day is a good day. Some are better than others.

[annekat]

Yes, all the positivity and support on this forum continues to amaze me. I wonder if any other disease has this good a forum. We are so lucky!

Booknut, I was a little too terse in my statement about being "not sick enough to have Wegs for 2.5 years." It wasn't that anyone was hinting that I might have Wegs and not doing enough to find out if I did or not because I didn't seem "that sick". That would be even more frustrating, because I would be looking it up and finding out about it and not getting an answer. The way it was, no one even suspected it as Wegs, I just thought, like they did, that it was a never ending series of sinus infections and allergies, like a lot of people have who don't have Wegs. So it WAS frustrating, but not in the same way. Then when it hit my lungs and I thought I had pneumonia, things were bad enough for someone to suspect Wegs. And the appearance of my saddle nose, plus the biopsy, clinched it. That version of a delayed diagnosis is pretty common, unfortunately. I'm at least glad that you are not all that uncomfortable, that your sinuses are pretty clear, etc. but just hope that doesn't keep delaying the dx if in fact you have it.

[drz]

Not sick enough to have Wegs?? Don't doctors realize that most diseases tend to tend to come in various degrees of severity from very mild to quickly fatal. Wegs used to be quickly fatal till they found some treatment for it, but I suspect that even back then people limped along for months or years before it became severe enough to get diagnosed. I bet many died from it without it being correctly diagnosed.

Limited does not mean not serious. In my opinion it is an archaic term meaning no kidney involvement but being present in respiratory system. I had generalized Wegs but my Wegs in lungs was a pretty serious problem, not a mild one, but without the kidney involvement it would have been called limited Wegs.

Biopsy of upper respiratory system according to John Hopkins web site are not as reliable as biopsies from lung and kidneys.

Wegener's Granulomatosis - Types of Vasculitis (http://www.hopkinsvasculitis.org/types-vasculitis/wegeners-granulomatosis/)

"Because Wegener’s so often involves the upper respiratory tract (sinuses, nose, ears, and trachea [“windpipe”]) and because biopsy of these tissues is a relatively non–invasive procedure, these sites are frequently biopsied in patients suspected of Wegener’s. Unfortunately, the yield of biopsies from these sites is rather low: probably less than 50%. Therefore, sometimes more invasive procedures are required to make the diagnosis.
Lung biopsy (http://www.hopkinsvasculitis.org/types-vasculitis/whatis/diagnosis.html#lung) (either open or thoracoscopic) is often the best way of diagnosing Wegener’s. The ample amount of tissue obtainable through these procedures usually permits confirmation of the Wegener’s diagnosis. Similarly, although the amount of tissue obtained through a kidney biopsy (http://www.hopkinsvasculitis.org/types-vasculitis/whatis/diagnosis.html#kidney) is usually much smaller, the finding of certain pathologic features in the context of a patient’s overall symptoms, signs, and laboratory tests is frequently diagnostic."

[drz]

More important info from the above web site: "Wegener’s granulomatosis is a disease involving granulomatous inflammation, necrosis and vasculitis that most frequently targets the upper respiratory tract, lower respiratory tract, and kidneys. Although Wegener’s granulomatosis can begin at any age, the average age of onset is about 40 years. Other organs frequently affected by Wegener’s granulomatosis include the eye (proptosis and double-vision from retro-orbital pseudotumor, scleritis), skin (ulcers, purpura). or peripheral nerve (mononeuritis multiplex). Wegener’s granulomatosis may be limited to one site for many months or years before disseminating. Systemic symptoms (fever, fatigue, weight loss) are also common. Anemia, mild leukocytosis, and elevated Erythrocyte sedimentation rate (ESR) are nonspecific laboratory findings. Chest radiographs often show infiltrates, nodules, masses, or cavities; only hilar adenopathy is incompatible with the diagnosis of Wegener’s granulomatosis. CT of the chest is more sensitive than chest radiography and can be abnormal when the chest radiograph is negative. Glomerulonephritis causes hematuria, erythrocyte casts, and proteinuria.

Untreated Wegener’s granulomatosis is fatal. Prednisone may slow progression of the disease but by itself is insufficient to arrest the disease. Respiratory tract disease usually progresses slowly, but renal disease can progress rapidly and therefore warrants urgent evaluation and treatment. With the traditional treatment of prednisone (initiated at 1 mg/kg daily for 1 to 2 months. then tapered) and cyclophosphamide (2mg/kg daily for at least 12 months), more than 90% of patients improve and 75% remit. However, 50% of the patients who later remit also relapse, and oral daily cyclophosphamide causes serious toxicity. Short-term toxicity includes cytopenia, infection, and hemorrhagic cystitis. Long-term use of cyclophosphamide in patients with Wegener’s granulomatosis more than doubles the risk of cancer overall, increases the risk of bladder cancer 33-fold and the risk of lymphoma 11-fold. Monthly intravenous cyclophosphamide appears less toxic but also less effective. Weekly, methotrexate appears to be an effective alternative for Wegener’s granulomatosis that is not immediately life-threatening, and it also appears to be beneficial in maintaining remission. The role of trimethoprim-sulfamethoxazole in treating active disease is controversial, with some finding it effective for Wegener’s granulomatosis limited to the respiratory tract, and others not. In patients who have achieved remission, trimethoprim-sulfamethoxazole reduces the relapse rate."

[annekat]

Thanks, drz. Your post made me realize I'd mis-worded mine so I edited it. Yes, a lot of people limp along for years and probably always have. Then things get worse, it gets diagnosed, we get treated, and we usually get better. Where before, things got worse, it didn't get diagnosed, or it did, but either way, people always died. So we are lucky indeed to be born when we were, if we were going to get Wegs.

One bad effect of more doctors learning about Wegs is that they could think they can treat it themselves and fall into some of the patterns we've seen here, calling it "limited", not being aggressive in getting a dx, etc. It seems some docs don't realize the seriousness of it and play around with treating it themselves when they should be helping the patient find a specialist or one to consult with.

[NikkiNicole]

There is no quicker way to upset me than my co-worker saying "we'll, you look better. You must be happy to feel better". No, I'm here trying to keep going with life (or was, I'm out for radiation now).
i am glad my oncologist pushed for the lung biopsy. Especially seeing how its a good area to look.

[annekat]

There is no quicker way to upset me than my co-worker saying "we'll, you look better. You must be happy to feel better". No, I'm here trying to keep going with life (or was, I'm out for radiation now).
i am glad my oncologist pushed for the lung biopsy. Especially seeing how its a good area to look. Yes, those kinds of comments are patronizing and dismissive. I think that, in a nutshell, is what makes them infuriating to me, although I may not show it at the time.

I'd forgotten for sure that a lung biopsy was the type of biopsy you had gotten. I'm glad I was able to get dx'ed with a nasal biopsy, but from what I've read lately, a lung biopsy has a better chance to be conclusive. I'm sure we are all anxious to hear the results when they come in!

[Dirty Don]

I had a lung biopsy...it was definitive. Got right to the heart of the matter right away. As for others, why do we care what others think...I only care what my loved ones and those who are familiar and care to be familiar with what I am think...way it is...I don't bother with other people's thoughts about this disease anymore...only you on here, my docs, and my loved ones count...makes me stronger that way too!

[annekat]

Well, Don, I'm not sure I do care so much what they think, and if I happen to tell them that they are wrong and they don't understand, I won't care what they think about that, either.... You do have a good point, though, and it is probably best to just ignore them..... not responding at all, just giving them a blank look, might be another way of handling it.... it wouldn't be the response they were fishing for.

[Jaha]

I had a wegs specialist tell me that she hated that term limited wegs, because it is all serious business. I thought that was good for me to hear.As for all the people that make comments about how well we look at times, they really have no clue and never will.

[BookNut]

All good perspectives for me to keep in mind as I navigate this maze!

Updating my scenario...... When my ENT's office manager called the pulmonologist, she was told that the doctor was scheduling into May, and they would get back to me. When I did not get a call from them, I called the general group office myself where they tried to pawn me off on a different doctor. However, I was insistant. I told them that both my doctors were recommending him, so I wanted only Dr. Nead. They finally gave me the direct number to his office. Incidently, it was obvious that the general office staff there had never heard of Wegeners. I gave the office manager at Dr. Nead's office my brief history. Interestingly, they called back the next day and gave me an appt....next Friday. Yay! Guess a not-so-pushy person would be put off till May. Or maybe the tentative WG dianosis perked them up!

Will keep you informed. Interestingly....the rheumy who made the diagnosis has been trying to get hold of me to find out why I am not taking the imuran yet. That will be an interesting conversation when we finally stop playing phone tag!

[annekat]

Medical personnel MIGHT have heard of GPA if they don't know what Wegener's is. When I get a chest xray, I'm usually not asked by the technician what my condition is (is it their business?), but one time, I was asked, seemingly out of curiosity. I answered "Wegener's Granulomatosis", which drew a blank, so then I said "it's a form of vasculitis, also goes by name of GPA" and that was something they had heard of and acted like they knew something about. Maybe there have been briefings due to the name change.

Why you are not taking the Imuran yet? Because you haven't been diagnosed with WG! This continues to seem weird to me. But I suppose she has a point, you can't get a dx, but probably have it, according to her? So she thinks you should take the drug.... presumably, if you don't have WG after all, it won't hurt you to have taken it just in case? I don't know. But this just doesn't sound like the standard procedure among the cases I've read about on the forum.

[BookNut]

I am actually the one resisting imuran, until I have a definite diagnosis. Once verified by a lung biopsy, I will start Imuran immediately. I am sure my rheumy is trying to reach me to chatise me for not taking the imuran as directed. I just want to be sure before I take something with a "black box" warning of possible lymphoma etc. Once I know, I will take it and be happy to take it in the hopes of avoiding cytoxan, kidney involvement etc.

If the lung biopsy is inconclusive....well.....I don't really want to think about that possibility yet. My PCP is against me taking Imuran at all. I will feel perfectly comfortable ignoring that advice if the biopsy confirms WG. If the biopsy is inconclusive, it will be a bit of a dilemma. If my rheumy and allergist vote for me taking it, I will most likely go with their advice over the PCP. It seems worth the risk if it will stave off WG. I just hope the biopsy will be definitive, making the decision a no-brainer.

I know most of you probably think I am crazy to procrastinate. But....Remember, all of this is happening during a period (4 months and counting) during which I have felt quite good, other than a week with the flu. I have good energy levels, clear sinuses, NO shortness of breath, and "only" daily mild coughing, and a wheeze that is only apparent to me when I exhale deeply. Granted, that wheeze never goes away, and sometimes becomes audible to those around me. But the coughing clears it up for an hour or so. It is relatively easy to live with compared to last summer and this Fall. But maybe I have just come to see it as my "new normal".

[annekat]

Booknut, we are on the same page. When I said "Why are you not taking the Imuran yet?", it was a rhetorical question, followed by the reason that you aren't!. I think most people on here would agree that it is not usual to go ahead and take the drug without a conclusive dx. I do see your dilemma, though, if you continue to be unable to get a dx! Then you might decide to go ahead and take it, and I'm not sure that anyone should judge you for that. And if you do, I wouldn't worry so much about the risks. I think it is considered one of the milder and less toxic WG drugs, compared to CTX, which I took. Any incidences of lymphoma or whatever else is cited are quite rare, I'm sure.

So no, I don't think you are procrastinating, and I doubt anyone else does, either. I think you are doing what any of us would do, not just taking the word of people who aren't WG specialists that you should take such and such a drug without even having a dx.

It would be great if you DON'T have WG, but I hope you get a definitive answer soon, either way, so you can move on with this decision in good conscience! Good luck!

[BookNut]

I am so appreciative of your help and support. Everyone's input has really helped me understand the choices, sort things out and decide on a plan of action. Can't ask for better than that! Also feeling better about a trial of Imuran if things drag on much longer.

[Terri]

[QUOTE=BookNut;66955]I am so appreciative of your help and support. Everyone's input has really helped me understand the choices, sort things out and decide on a plan of action. Can't ask for better than that!

I don't know where I would be without the help I've gotten from this forum. My first thought was finally...someone knows how I feel!
Tonight I have a heavy heart. :sad: I received a phone call on Wed. telling me about someone that had the same disease that I have. To make a long story short..I had told her I would come and visit her in the hospital as soon as I could. I went this evening to see her and wasn't even able to talk to her. This morning her left lung had collapsed and she is now on a ventilator. Her husband told me she was definitely diagnosed with GPA. She had been in the hospital in Aug. and was diagnosed with pneumonia and was put on prednisone (not sure how much) and was recently taken off. They are now starting her on CTX. I just felt so bad when I saw her, thinking that could be ME.:crying: I will continue to check on her progress. As it turns out, we live in the same town. Wow! Imagine that! Now I will have someone to talk to in person. I just pray she gets better.

[rebekah]

I agree, Terri - I am so glad I found this forum with such incredible and helpful people... I don't know where I would be without you all! I'm so sorry you got that call. Having someone to talk to in person who knows what you're going through would be nice. Glad you live near her and can at least go visit. I send my well wishes to her and hope she gets well soon!

[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.

[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.:predrage: 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.

[drz]

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.:predrage: 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.

I think I was intubated more than 10 days. I would guess about 12. No one dies on the machines, but the problem comes in trying to get you off it. I would encourage them to try get a quick consult with some of expert centers to see if they have any other ideas. They can do it remotely if she is too fragile to be moved. They canfax all info and discuss her case by phone or video chat since most of these facilities have telemedicine.

Is she a candidate for plasma exchange? I think that having umpteen of those was important factor in my survival. I also had RTX IV and then CTX IV within a few days. The sad, but real scary fact though many of us know only too well, is that misdiagnosis or failure to get correct diagnosis and proper treatment quickly can be fatal for our disease. That is main reason about 10% don't survive first significant treatment for Wegs (GPA). Some times it is due to bad breaks no one can foresee or prevent like drug reaction, attacking a vital organ organ before Wegs can be controlled, or an infection that gets away.

I hope she is able to survive and regain a recovery from her serious condition and we can only extend our hopes and wishes that she does. Remember most survive their first treatment, we all did and some of us had serious cases too. So there is hope.