Newbie...not sure if I have WG

[BookNut]

Hi! I have been ill for 18 months. In addition to my GP, I Have been to 2 pulmonologists, 1 ENT, 1 Allergist, and 1 Rheumatologist. The last two have mentioned an elevated ANCA reading in my blood tests. I have had a constant cough, have felt mildly ill and have had hoarseness, loss of smell and sinus infections. I had one period where I was very short of breath, and was taking albuterol via compressor 4 times a day...without a whole lot of relief. Then I had a period where I was VERY short of breath and ended up in the hospital for a week. I had CT scans and was told my sinuses were full and possibly I had polyps. Also an infiltrate in the lungs. Lots of antibiotics and prednisone throughout the 18 months. ENT put me on more of the above after the hospital stay in August, and the sinuses cleared out. ENT said He did not see a need to do sinus surgery.

The allergist said my allergy testing showed only mild allergies to grass and trees. But she became concerned about the elevated anca and sent me to the rheumy who has diagnosed "mild wegener's". From all I read, I am very skeptical of the diagnosis, because, with the exception of the hospital visit, Idon't seem anywhere near sick enough to have Wegeners. Right now I have no symptoms other than a constant cough and a wheeze on expiration that won't go away. I take Symbicort twice a day. My zyrtek seems to do the best job of relieving symptoms. I Have taken many standard asthma meds...but the cough and wheeze never go away. Still...I have plenty of energy, and feel good most of the time since December. I don't want to take the Imuran the rheumy has prescribed. It seems a bit like swatting a fly with a baseball bat. On the other hand, the doctor tells me if I don't take it, I might develop full-blown WG. And of course I would rather avoid having to take cytoxan.

So tell me....is there such a thing as "mild wegeners"? Right now my plan is to go Back to my ENT and see if he could biopsy my sinuses...though they seem clear right now. Or perhaps ask for a lung biopsy. I really want to be sure of the diagnosis before taking an immunosuppressant.

Thought?? And thank you for reading all of this!

[annekat]

Welcome to the forum, BookNut! Wegener's is Wegener's whether "mild" or "full blown". I and others know from experience that one can go along for years thinking we just have allergies and sinus infections, and then BAM, we get into serious trouble and start coughing up blood from hemorrhaging lungs, or something equally dramatic. I think you are right to get a biopsy, and the sinus one would be easiest, but do it soon! After that, get the prescription for the meds that you need right away. If you don't, yes, it could get much worse, and people always died of this back in the mid-20th century and earlier, after the disease was identified, but before they knew how to treat it. There is also the matter of whether you have access to doctors who are true vasculitis/Wegener's specialists, and people on here will get on your case about that. I'll leave the rest of the lecturing up to them, and wish you the best of luck! i hope to hear from you again, with an update.

[marta]

Hey BookNut,

Sorry that you are in a position that you have to search out your own answers but you've stumbled onto a great forum. I can say from personal experience that the conversations here have pulled me out of some darkish places and I am grateful to have had this group to turn to when things were new and uncertain. Uncertainty is one of the hardest things on the brain with this disease (or any other for that matter.)

I want to say that anything I say is from my own personal experience and the most important thing is to have an honest open conversation with your doctor. Some docs are better than others and if you indeed feel like you're on the Wegener's train, search out a doctor who is familiar with the disease (more than just a few patients - you want someone who sees either Wegener's patients or Vasculitis patients regularly as treating this is a pretty good mix of art and science as we're all as different as we are the same.) I don't know where you live but there is some great resources on this forum for the US, and UK and if you're in Canada, I have a pretty good list.

Also in my opinion, from what I have read, regardless of which autoimmune disease you have, the sooner it's caught and treated the better your chances of not having to deal with it again in the future, whereas if you let it go to a point where it's acute, not only are you fighting for your life now, you also have a life-long disease. Considering what you have to do for treatment when you're acute, a milder version to knock it down seems fairly reasonable to me now... but that is me talking after the experience of having a full on battle. I don't know that I would have been that easy to convince before diagnosis to take a mild immunosuppressant like Imuran. So it is a big decision. A very hard decision, and one that must be made in cooperation with a good doctor. It might be that you are feeling fine because of the corticosteroids in the Symbicort, and they could possibly be masking the advancement of the disease. In order to treat this bad boy, you need the combo of the steroids and the immunosuppressants.

So I think you should do some research on line, either go to your doc if you feel like he sees enough Vasculitis patients, or search someone out who does, and pursue this now while you still have options. With WG, it's always good to get a second opinion if you're able to. It's a nasty disease, and if you have an opportunity to nip it in the bud, you should take it, with whatever choice you make, but you have to be fully involved I think. Again, I speak from my own experience and having listened to and read so many stories on here, but ultimately we make the choices of the direction that this path goes. I certainly am a different patient now than I was three years ago, and the folks on this forum gave me the strength to stand up for myself in a sometimes not too friendly medical system.

All the best, and know that this is a great place to come and ask questions, and vent and just throw it all down.

Peace,
marta

[BookNut]

Thank you for your replies. They are very helpful. Both stress getting an experienced doctor, but How do you go about finding someone? I live near Rochester, NY which has a reputation for excellent health care providers. still, it has taken 18 months and 6 professionals, not counting the folks in the hospital, before WG was ever mentioned.

[mishb]

Hi BookNut,
Welcome to the group and I am so glad you have found us.

Marta and Anne are right on the ball.
My condition is also classed as mild. I have sinus, ear, eye and joint pain.
It took nearly 18 months to diagnose mine from just normal RA (which I have markers for) and chronic sinusitis.
I still work each day and have not been laid up in hospital except for the intial period of testing which was over 4 days.
Wegeners is a sneaky little blighter and will attack you very quickly, without warning, if you so much as look the wrong way.

You can locate a WG specialist on the Vasculitis Foundation website. I hope the below link works
VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/)

I only know this because of being on this forum and I hope the link above is the one that they usually share.
I am from Australia and we don't have this type of support over here.

Best of luck to you BookNut and please don't leave it too late.

[drz]

Thank you for your replies. They are very helpful. Both stress getting an experienced doctor, but How do you go about finding someone? I live near Rochester, NY which has a reputation for excellent health care providers. still, it has taken 18 months and 6 professionals, not counting the folks in the hospital, before WG was ever mentioned.

Here is a list:
VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/)

[annekat]

Thank you for your replies. They are very helpful. Both stress getting an experienced doctor, but How do you go about finding someone? I live near Rochester, NY which has a reputation for excellent health care providers. still, it has taken 18 months and 6 professionals, not counting the folks in the hospital, before WG was ever mentioned. i should have included the link for the VF list of doctors, but I guess was waiting to see where you are and what your doc situation is. I have no doubt there are excellent health care providers in your area. But it would seem that many excellent doctors are somewhat clueless when it comes to WG, don't think to test for it soon enough because it is "rare", tend to doubt we have it for the same reason, and once they realize we have it, don't realize they haven't the sufficient experience to treat it properly, nor do they bother to find out who does. This has happened to me, and I have some doctors who are considered excellent for most people's purposes. Many people with WG are quite some distance, even hundreds or 1000 miles, from med centers which have WG/vasculitis specialists on board. You might be luckier than that, or only have to travel 50 or a couple hundred miles. As an alternative, people who can't get to a true specialist can have their doctors consult for one from the VF list for free. If the doc is willing to do it, that is.... and if they aren't.... well, find another doc. I'm still unclear on who initiates this process. This is a problem I am dealing with and have fairly mild WG so it is easy to procrastinate. But since things might get worse, I really should get a more attentive and knowledgeable doc lined up. I'll always be a bit of a hypocrite nagging others about this when I'm not doing it myself! Maybe I'm trying to nag myself into it as well.

[Alysia]

hi booknut.
I am new here but not in WG. I had similar symptoms before the acute onset. then there was a question if it is WG or not. the docs defined it as 'limited WG'. they did not give me immunosuppresive med. I got sulfa and pred for a while and it helps. but then the joints 'join' and the nose became worse, started deformation. then I had no choice. maybe I should have start MTX before. I was afraid of it. but it is not as bad as I was afraid.
I did my own research and found out the C-anca is a reliable indicator to WG. I can also tell that it correlates my state: when I feel better it is lower or even negative. when I was in acute state it was high.
Alysia

[Pete]

Hi Booknut,

Welcome to "the club". Sorry to learn you're dealing with GPA/WG, but you've found a good resource. As to your question regarding how to assess whether a wegs doc is right for you, I think a key indicator is the number of GPA/WG patients they see. I was diagnosed at Ohio State and was treated there by a pulmonologist for about 18 months. The OSU Medical Center treats about 35 weggies. After spending some time researching, I decided to self refer to the Cleveland Clinic. Their Vasculitis practice sees about 700 weggies. Several of us who are part of this forum also go to CC and are very satisfied with the quality of care. For me, it's a 2.5 hour drive (one way) to get there, but I only go 3-4 times a year. I would guess that Cleveland is a 5-6 hour drive from Rochester, so it could be an option.

Glad to have you join us. Good luck with your treatment.

[annekat]

Alysia, you are lucky that the C-ANCA indicator does correspond so well to your disease activity. Apparently not everyone's results are conclusive, including mine, though it hasn't been a problem because I've been able to tell in other ways whether my disease activity is stable or on the rise. But it is certainly good to have as many reliable indicators as possible. It does seem upsetting that you weren't started on any immunosuppressants but prednisone even though they had a diagnosis of WG. They could have avoided the nose deformation, I would think. I have that myself and it occurred just before my dx. If only they had thought of WG two years earlier...

Booknut, as for number of WG patients a specialty center sees, of course the more the better. But since I can't get to one of those places, I would be happy with a center that only sees 35 patients at this point. I would hope they would then regularly consult with the CC or another major center. I figure they have to start somewhere, and the even the docs at CC must have started out having seen very few WG patients! By all means, I'd go for very the best you can get, though, and if you can get to CC, even one or two times a year, you are lucky.

[BookNut]

Thanks SO much for all the information! I will look at the link for sure - and I will ask how many weggies are being treated by my current doctors. My daughter lives near Cleveland, so I would have a place to stay and an excuse to go there more often - but the drive is about 7 hours from our house. Yikes! I just feel that I REALLY want to be sure of the diagnosis before I leap into an immunosuppressant. And especially since my GP, who is a wonderful doctor, feels that I should not take it at this point. She is an integrated medicine doctor and likes to look for natural cures. She has prescribed me plenty of "traditional" meds - but wantsme to try cutting out GM wheat, corn and soy from my diet before trying Imuran. I know the research connecting those foods with immune problems - but if it has lead to WG, it has taken about 63 years to do so. Dropping them now does not seem like a quick fix to me. I switched to about 80% organic two years ago, and now plan to purchase a heavy duty mixer so I can make my own bread with organic flour. I think we would be healthier as a population if we eliminated GM products from our diet. However, as a cure of this ongoing illness I have? Not so much. So...I will keep looking for a WG specialist.

Agan - many thanks. I am glad to have found this forum!

[BookNut]

To annekat,
I don't have the nose deformity, but I know it is a common occurrence. So far only my last two doctors (out of six) have considered WG. One thinks I do not have it (allergist), and the other thinks I do (rheumatologist). So....I guess I want to find a "tie-breaker" before I get into more heavy duty meds. I hope to get it settles first...but if I can't get a definitive answer in the next 2 or 3 weeks - then I will start the medication and see what happens.

I wonder why it takes so long to get a diagnosis. When my sinus problems began to linger on for more than 2 month, I started doing research and Wegeners kept coming up as a possibility. I should have said something to my doctors - but reading the symptoms, especially from those who have the disease, I just decided I was not sick enough to have it. Oh well. Hindsight is 20/20 as they say....

[annekat]

Sorry, Booknut, I got my newbies mixed up and should have addressed my last comments to Alysia, re the nose deformity, etc. I've now edited that post.

I was able to get a very quick appt. with my ENT for a biopsy of my nasal septum which led to a diagnosis. Of course, I made it sound like an emergency because I had an obvious saddle nose and a lump by my ear which turned out to be a swollen parotid gland, also probably related to WG. And they had a cancellation, so I got in the day I called. Got lucky. If you could get a little pushy and get a nasal biopsy, it would help your predicament.... this procedure, while uncomfortable and took awhile, was done on the spot right in his exam chair, with just a topical anesthetic. The doc was pretty sure I had WG and he and his nurse were nice enough to stay after hours to get this done.... I'm sure he feels bad that he saw me so many times for ear and sinus issues and never suspected WG.

There is nothing wrong with trying out diet changes and natural treatments, with certain precautions that others on here can tell you more about than I. You do not want to do anything that stimulates the immune system. And if you find out you do indeed have WG, everyone on here will tell you you MUST go ahead and take the immunosuppressants. I'd try to get a dx ASAP!

I have just started eliminating wheat from my diet. That is a whole other subject, which was touched upon in another thread. There is book called Wheat Belly that a lot of people are talking about. Sure, non GMO wheat is better than GMO wheat, but according to the current thinking in this book and among people more knowledgeable than I, ANY wheat that is being grown today can cause major problems with weight gain, belly fat, and susceptibility to autoimmune diseases. This is because the wheat has undergone some major unintentional changes resulting from breeding it for much higher yields. This is not the same as GMO. There is very little wheat seed available, or wheat being grown, that has not undergone these unintended changes. That is as much as I can share on the subject without putting my foot in my mouth, but I do know personally of people who's joint pain has disappeared after a month or so of a non-wheat diet. This would not be a main treatment for WG but could help in warding off flares, I would think, maybe....... Anyone who wants to blow me out of the water, feel free! I'm really good at talking about things I don't know a whole lot about.

I don't blame you for wanting to avoid the chemo immunosuppressants, but do not be too afraid of them, as they are the only way out of WG. Keep in mind that we take them in smaller doses than cancer patients, though over a longer period of time, so we need to take certain precautions to avoid harm to some major organs..... But most of us get used to the side effects and get our symptoms under control without any major problems.

[Dirty Don]

So tell me....is there such a thing as "mild wegeners"?

Hi, and welcome as always to all...I happen to have what my pulmy calls Wegs Lite...funny guy...sheesh. But, as you have, I have had all those very same symptoms and treatments for allergies, etc. What it all culminated in was a giant flare that darn near killed me, or as my pulmy & rheumy pointed out, it should have...sheesh again. So, don't delay, IF you truly do have WG, then it needs to be treated appropriately and quickly before it gets worse...a mild case is a bit easier to deal with than many of the other cases I have heard of here...it can kill you just as dead as a heavy case can...'nuff said...go get'em and hang tough!

[annekat]

What Don said!!!

[Marci]

Welcome Booknut, Listen to Don and "get"em and hand tough". People here got me off my butt and started to right place for treatment.

[BookNut]

You guys are fabulous! We are just back from a mini vacation and are spending the day getting me lined up with a plan and the necessary appts. I have an appt now with the ENT to ask about a biopsy. My hubby (who has had severe asthma all his life) is working on getting me in with his doctor who happens to be THE premier doctor for asthma, immunology and rheumatology in this area. I doubt that I will get in with him - but possibly someone else in his office. I just do not feel entirely comfortable with my current rheumy. I guess no one can satisfy me. I have been complaining about how long (18 months) it has taken to make a diagnosis, and then when a new doctor makes a diagnosis after two visits and a few lab tests during a period of time when I feel almost normal...I complain that the diagnosis is too fast! Anyway - you all have given me info that helps me to know I am on the right track by getting a biopsy and finding a doctor with lots of WG experience. Hurray and thanks !!

[Psyborg]

Limited Wegeners (I'm guessing that's what they meant by mild) means no Kidney involvement, but can still be very serious.

On the other hand if they just mean it's not heavy impact yet then keep in mind it can continue to get worse if untreated. Getting the best treatment means the best chance of eventually getting into drug-free remission. (IMO)

[Jennie]

Hi BookNut and Welcome

I too have been diagnosed with what my rheumy calls "limited" or "not full blown" wegeners. I have some similar symptoms to you in that I had changes to my voice and hoarseness for a long time. I did have a couple of throat biopsies which showed granulomatosis of the supra glottis. It took a few years and many tests for the doctors to come up with a diagnosis of Wegeners and i have been treated with immunosuppressants since january of 2012, first mtx and for the last year and counting Imuran. It does seem to be helping although rather slowly, I am no longer hoarse and my ENT can now see my vocal cords when he sticks a tube down my throat. I think I may be on Imuran for the foreseeable future. When I cough, I do have a wheeze so I think my airway is not as wide as it should be.

Anyway, in my case, there is definitely such a thing as "mild" wegeners although I am always worried that this may change to "not so mild" and I am hoping that the Imuran is keeping it in check. Good luck with your ENT, I hope you get some conclusive answers soon.

Jennie

[HopeinTN]

I think you are on the right track with requesting a biopsy. I have Wegener’s in my lungs and it was not reflected by my ANCA tests. However, a lung biopsy that turned into a lung lobectomy, gave the positive Wegener’s diagnosis. I started Cytoxan October 2011 and still on it for now. I’m hoping that after a recent appointment at Johns Hopkins (Dr. Seo), I will be off it real soon. Oddly enough, I had sinus issues, I’ve been hoarse since college and have had sinus surgery, but no Wegener’s in my nose based on the biopsy. Apparently, it’s warm and cozy in the lungs and not looking to move. J 　This disease is so complex and I know it can be scary. I hope you get the answers you are looking for and get an appointment with a great doc soon.

[drz]

Most of us familiar with GPA and it seems most of the recognized experts consider the term "limited" pretty worthless. It is supposed to designate the organs affected but seems to get misapplied to meaning severity of the GPA disease. There is some hope they will change it to defining GPA and listing parts of body involved and then maybe apply an adjective to estimate severity (mild, moderate, severe etc).

The disease is also very variable with how lab results correlate with your symptoms. Some of us are lucky to have a fairly close and tight correlations, other not so much. That is why the experts are so important. It can be very costly in time and money to see one, but funerals and disability are not cheap either. It takes me three days to go see my expert for consultation. One day travel each way and one day for lab work and appointments. I know many others fly considerable distances to do so. There is a reason why patients often fly across the world to go to Mayo Clinic or other recognized expert medical facilities because one can't put a price on their health. When you lose that, not much else matters. Making it your top priority can be very difficult decision and tough adjustment, but some people here have quit work and made their health care their top priority. Fortunately for us expert consultation is readily available for treating GPA at no cost and well worth whatever effort is required to get it. I was extremely lucky I guess since my treatment team has with no effort from me has consulted with three of top experts on the list for my treatment which gives me great peace of mind that it is right for me.

[BookNut]

DrZ
It all could definitely be clearer. From my research, I did discover the difference between limited and systemic. But both seemed pretty serious to me - and way beyond the degree of sick I am right now. Though very similar to a surprise crash I had in August that put me in the hospital for a week. After much research, I do not see anything about "mild" wagerers. The doctor was advising taking imuran to avoid the disease escalating. Hence my confusion. I am feeling pretty comfortable about not taking the imuran until after I see the ENT on a week and get his take on everything - inluding the possibility of a biopsy. I will also talk to him about the Cleveland Clinic, since it is certainly possible for me to go there a few times a year.

Here is what amazes me. Waaaay back 18 months ago, when my usual autumn symptoms did not go away as they usually do, I typed in my symptoms into Google On the first page came up several pages that referenced WEgeners. I read more about it - and dismissed it since I just thought it was a very bad allergy year. Why are doctors SO SLOW at least considering it as a diagnosis?

Anyway - it is good to hear from you and so many that it is worth the trip to travel for treatment from doctors who are very familiar with the disease.

[annekat]

Booknut, the same thing happened to me, googling about my sinus and ear symptoms and coming up with Wegener's as a possibility, at various times in the 2.5 years between my big, weird ear infection and my diagnosis. I'm not excusing the doctors, but I think if it acts like ear, sinus, and allergy stuff, that is so common in the general population that they just chalk it up to that. And I'm sure I did the same thing, thinking that if it was Wegener's they would pick up on it... after all, there were other things on the list of possibilities, too. So, since my allergy test showed strong reactions to grass and tree pollen, among other things, I went with that and got allergy shots for a year and a half before WG went into my lungs to the point where I had to go into the hospital overnight for tests, and a smart internist guessed WG. Even then, my pulmonologist doubted I had Wegener's! He didn't know I'd gone to my ENT for a biopsy while he was on vacation, and the results hadn't been reported yet, so he put in a call to my ENT, and got the results! My C-ANCA test had been inconclusive in his book, since the reading was very low.... so he was just going to send me home with more antibiotics, prednisone, and inhalers. And this is the guy who is now treating my WG, since my ENT said he does not treat it, though he has seen 3 cases in his practice and knows what it is. So, yes, with the number of people getting WG, even if it is "rare", why aren't doctors more apt to suspect it in the early stages, especially when a patient has something really uncharacteristic at age 57 like a bilateral antibiotic-resistant ear infection! You've got me on a rant. The question is perhaps, is something being "rare" a good reason not to test for it? And I'm tired of the excuse that it's so rare that doctors haven't heard of it or don't know what it is. Even my dentist and oral surgeon both know what it is and have learned in dental school how to deal with patients with Wegener's.

I do think it a bit odd that your doc thought WG was a strong enough possibility to want to put you on Imuran but didn't push for a biopsy first. If you are at least on prednisone, that should help, but I'm glad you are going to try to get the biopsy soon so you will really know what is going on. Good luck with that!

[mishb]

Mine was basically the same as yours Anne.

I googled and it came up with Wegener's and I remember saying to my mum, I don't have that condition, no way........I guess I can be wrong just once :flapper:

My GP gave me every antibiotic and allergy tablet under the sun and nasal sprays galore.
My husband and I kept pushing for her to write a referral to an ENT and finally she agreed.
The ENT looked at my nose and said, I'm pretty sure you have Vargeners (yep, with the accent), and sent me away for blood tests.
My ANCA came back at 100 and then the ENT sent a referral to our main City hospital for them to take on the case.......and there I have been since 2010.
My GP and others in the same Clinic, are excellent now and are becoming more aware of these types of conditions - and I only found out last week that I am their first WG patient.
Once at the hospital, I still wasn't put on MTX until after my nasal biopsy came back - which was another 2 mths (8 weeks).

Good luck with the ENT next week BookNut

[drz]

The above posts are unfortunately pretty typical for many of us. I had never heard of Wegener's either till I was given it as a possible diagnosis. When I asked many of my doctors later after my diagnosis how much experience they had with Wegener's the usual response was some thing like, I remember a question on it for my boards, or I saw one patient once but he died. Like the others above i saw over a half dozen different doctors trying to chase down the different symptoms but until it became real serious after many months and put me into hospital with serious organ damage no one had a clue it was Wegener's. It still took two weeks after my admission before some lab work came back from Mayo suggesting the correct diagnosis.

It seems like Wegs can smolder along for months or even years but then for some unknown reason it breaks lose and gets real serious and kills you unless you get correct treatment.

[Dirty Don]

Same here drz...my internist took xrays, said something to the effect that 'something' was going on in my lungs...duh! After my collapse about 2 weeks later, he later admitted to 'reading about WG' in one of his med school books...he didn't have a clue and he felt badly about it...thanks for that much I guess.

[annekat]

Me, too, drz and Don. My Wegs did smolder for at least a couple of years, if you can call a snotty nose, hearing loss, and a perpetual frog voice, interspersed with unexplained joint pain, "smoldering".... At the time it started going into my lungs, it was still a couple of months before dx, and I'm SURE I would have died if they, with quite a bit of help from me and this forum, had not figured it out when they did!

[Randy]

I agree, keep pushing for tests. I started getting symptoms this time of year (Jan. Feb.) the doctor's all passed it off as flu or cold symptoms. Their offices are full of people with colds, the flu and sinus problems this time of year. It's hard to blame them for thinking that way. My GP has been practicing for 25 years, I'm the only WG patient he has ever had. He works in a clinic with 5 other doctors and none of them have ever had a Wegner's patient. I think that makes it easy for them to overlook a rare disease like WG. I think if I had been more insistent that something was wrong and demanded more tests they would have found it sooner and I wouldn't have got as sick as I did.

[annekat]

I agree, Randy.... but it is like we would have had to figure out about the existence of Wegener's on our own, and THEN push for tests specifically for Wegener's! All the same, anyone now suspecting Wegs without a dx should definitely keep pushing! And this forum is a huge help in knowing what to look for and what to push for!

[BookNut]

Is there any specific blood tests I should ask for? Any particular type of biopsy? Right now, my only symptoms are a persistent mild cough and wheeze. Is there something less invasive than an open lung biopsy? A few months ago, a sinus biopsy would have been promising...but my sinus symptoms have abated completely. Another reason that I question the diagnosis. The hoarseness went away in mid- November, and the sinuses quit draining in December. Up till then, the sinusitis had been pretty much continuous since in started in August 2011. Thinking in terms of "flares", I can now identify three specific periods where I was exhausted, short of breath, hoarse, lost my sense of smell, and had a lot of pain in my sinuses. The last flare was the worst, where I could not walk three of four steps without gasping for breath and ended up in the hospital. Now....nothing but a persistent cough and rancorous breathing/wheezing. But I can walk three miles. First mile I sound like Darth Vader, but I am getting plenty of oxygen. After a mile, I can finally clear my throat and do the last two miles comfortably. I just went to the NP at my immunologist's office to see if I needed an antibiotic. She asked me if I used an asthma inhaler. I said what I tell all 6 of my doctors. Inhaled asthma meds don't help that much. she had me try it out and then she did another lung function test and said, "You're right. It doesn't make much difference." Well...duh! But I guess they have to see for themselves.

So...even if I have a biopsy, I wonder if anything helpful will show up, since I am so much better right now. Had an xray done and they said it was all clear.

So...you can see my dilemma. If there are any tests that I know should be done, I will insist they be done. I am not shy. I just need to know what to ask for.

Also, I will probably post this somewhere else on the board as well...but are their specific doctors from the Cleveland Clinic that you could recommend?

Thanks again everyone!

[annekat]

Others can tell you more about the tests. The ENT should know what tests should be done and what kind of biopsy to get in hopes of finding an answer, and whether your abated symptoms mean less chance of getting a meaningful result. The whole time my Wegs was smoldering, the symptoms came and went, got better and worse, and when the biopsy was done was definitely while it was active. So I guess that could make a difference. If your Wegs is not currently active, I guess most of the tests might not show much abnormal.

The Vasculitis Foundation website has a list of docs who are considered specialists, including those at Cleveland Clinic. I think probably all of them on that list have been recommended, but the one who stands out in recent discussion is Dr. Villa-Forte, whom people seem to be able to get an appointment with fairly soon, and who has received good reviews from several forum members. Other docs there, such as Dr. Langford, may be more famous and harder to get an appointment with anytime soon. Just my observations of discussions on here.... I have no experience with CC or the ability to travel there.

[BookNut]

Thanks AnneKat! depending on what answers I get over the next two weeks, I will plan to see about getting in with CC. Knowing specific names helps me do research and place them in an order of preference.

[drz]

Same here drz...my internist took xrays, said something to the effect that 'something' was going on in my lungs...duh! After my collapse about 2 weeks later, he later admitted to 'reading about WG' in one of his med school books...he didn't have a clue and he felt badly about it...thanks for that much I guess.

My podiatrist was only one who suggested I might have some systemic disorder and apologized several times for sending me to see a physiatrist to test for spinal stenosis instead of sending me to the rheumatologist for evaluation.

[annekat]

Ooh, great avatar, Booknut!

[BookNut]

Thanks AnneKat! This was from my last year working as a school librarian in a high school. We had a special group of kids who hung out in the library....so I decided to have a "royal wedding tea party" to celebrate the wedding of William and Kate. We had wedding coverage running all day on the screen and I had two formal tea parties , plus an informal buffet going all day with tea, scones and jelly rolls. Being of British heritage, I had to bring my good china tea pot and silver serving pieces....even though, regretfully, I had to settle for pretty pink paper cups and plates! We all raided the theatre department's wardrobe room and had a blast!!! One of my many fond memories from my 40 years as a school librarian. I loved it, and miss the kids SO much!

[BookNut]

Nice to know that doctors keep track.... My rheumy has been trying to call me, and we keep missing each other. She had noticed that I had not started the Imuran...or at least she wasn't getting the weekly lab reports to determine my tolerance to increasing the dose. I figured she was going to give me a lecture about getting started. She finally reached me today and asked what was going on. I explained my desire to get a biopsy to make a positive diagnoosis. She said , "As long as your symptoms have not increased, I can respect that decision." I was pretty impressed. I didn't think she would even notice that I had not started the regimen....let alone call me personally three times to find out what was going on. Between her and my allergist...I can't get away with much.:biggrin1:

[annekat]

Well, that's great, Booknut! On one hand, it's great that she cares enough to keep track of you. On the other hand, it is always gratifying to have a doctor respect your decision like that. After all, we are the ones who must live with this 24-7, not them, AND we are the ones who have time to do the research on this rare disease and how it is normally handled by specialists. Of course, without this forum, we would have a lot harder time doing that. We are so lucky!

[BookNut]

Hello Everyone!! Here is the latest...

Went to the new pulmonologist today. He is TERRIFIC. From the University of Rochester (NY) Medical Center. Spent lots of time with me. Wanted lots more tests. He said he had a "hard time thinking this was Wegener's" based on my current condition and the lab tests. He has had many Weggies and my symptoms do not say WG to him right now. He plans for me to have another CT scan of the chest, talk to my favorite specialist (my allergist) and the rheumatologist who made the WG diagnosis. My breathing issues definitely do not fit an easy diagnosis - but he is insistent that he will get to the bottom of it. He COULD do a bronchoscopy or a more complex lung tissue biopsy - but wants to wait on that a bit, till he has more information. He told me to NOT take the Imuran, and to continue on my current meds. He said he wil consult with another colleague at the office and also will refer me to one of the two rheumy doctors that he likes. He sent me for a ton more lab tests. He mentioned during the visit, bronciecstasis, emphysema and interterstrial lung disease - and ABDA (or something like that) which is an infection of the lungs caused by the aspergillius fungus. So….he is VERY THOROUGH. Already knew the names of all the specialists I'd been to etc. Promised me we would get to the bottom of things, and when I was leaving, shook my hand and said "Thank you for being so interesting!" =)

So - no answer yet - but maybe a solution is in sight??

[Randy]

Wow he certainly sounds like he knows what he is doing. I hope he is right and it is not WG. Good luck on all the tests.

[annekat]

That's great, Booknut! For the record, let me say that my pulmonologist also did not think by the way my lungs looked and sounded, and my various test results so far, that I had WG. This was even after my hospital internist saw it as a strong possibility, judging by my lung CT scan. Five minutes later, after he called my ENT, who had just gotten back the results of my nasal biopsy, all of a sudden I had WG and he was going to take it upon himself to treat it.

Our situations are very different, though, as your pulmonologist sounds much more thorough, personable, interested, willing to take the time needed, and less dismissive. I'm glad you got validation that you shouldn't take Imuran until you know you have WG, and who knows, maybe you don't! I'm glad you are overall very happy with your visit to this doctor.

[BookNut]

Thanks Anne and Randy! Of course I am glad that it MIGHT not be WG....but mostly I am glad that he recognizes there is SOMETHING odd going on and wants to pursue it. I feel that if it IS WG -- he will find out. If it is NOT - I will still check back with you folks now and again. You have been TREMENDOUSLY helpful to me, and I feel as if I know many of you already. And at the very least, I can help out with my knowledge of natural/organic/wheat free eating! The least I can do when thank you is not nearly enough - and hugs via the computer are not really possible!

Oh...one more thing. I tried to add something to my signature. I could fine the sig - but couldn't figure out a way to change it. Any ideas? Maybe my computer is being porky....

[annekat]

I went to Settings, then under Profile on the left, clicked Edit Signature, and a whole text window appeared on the right with my custom signature, which if I wanted to, I could then add things to in different fonts and colors.​I hope that helps!

[drz]

Thanks Anne and Randy! Of course I am glad that it MIGHT not be WG....but mostly I am glad that he recognizes there is SOMETHING odd going on and wants to pursue it. I feel that if it IS WG -- he will find out. If it is NOT - I will still check back with you folks now and again. You have been TREMENDOUSLY helpful to me, and I feel as if I know many of you already. And at the very least, I can help out with my knowledge of natural/organic/wheat free eating! The least I can do when thank you is not nearly enough - and hugs via the computer are not really possible!

Oh...one more thing. I tried to add something to my signature. I could fine the sig - but couldn't figure out a way to change it. Any ideas? Maybe my computer is being porky....
I hope you get a correct diagnosis soon and it is turns out to be something that is easily treated and curable. Best wishes for better health soon.

[BookNut]

I hope you get a correct diagnosis soon and it is turns out to be something that is easily treated and curable. Best wishes for better health soon.
Drz
Thanks so much! You have been very helpful and encouraging through all this. I feel as if I am finally on the right track. It sure is a matter of persistence isn't it? One of the possibilities mentioned today was related to the aspergillus fungus. Interestingly - my PCP treated me with an anti-fungal quite a few months ago. Her theory was mostly "none of the traditional asthma meds are working. This has very few side-effects and it has been successful for several of my patients". I did improve for 2 months - but then went down hill again. It will be a hoot if we find out - 7 specialists later - that the PCP was on the right track in the first place!

[BookNut]

Thanks Anne. Got it done. It was my iPad. Tablets can be funky sometimes!

[mishb]

BookNut I'm so glad you are seeing someone that is interested in getting a diagnosis/result for you.

I so hope that you don't have WG but I don't want you to have aspergillus either........from what Phil has told us, it's not pleasant.

Here are some computer hugs for you :hug1: :hug2:

[Alysia]

Hi booknut.
there is a say that even in "bad luck" you need some luck. you have it with your docs "team". I think that it is also because of your insisting on getting exact answers.
In my case, my doc did "case conference" about me at hospital with couple of experts.
I think they like it. after that, maybe they will write article about you...:cool1:

I hope they will find soon what it is, and that it will be easy to treat.

[rebekah]

So glad to hear you have a team of doctors working endlessly to find out whether or not you have WG. I hope you an have a diagnosis soon, so you can be on your way to feeling better! I'm glad to hear you'll still check in once in a while - you are full of some great information.

[annekat]

Jacquie, it's nice to know your real name! I know that before anyone thought of Wegs, my docs should have investigated the possibilities of molds and fungus and never did. A woman doctor who came by my booth at the Market was suggesting molds all over the place when she realized all the trouble I'd been having with "sinus infections" and such. But since she is a doctor, perhaps she should have thought of Wegs as well!

Anyway, I don't know whether to hope you have WG or something else, in case the something else is just as bad or worse! I echo everyone's sentiments that it is something easily treatable and NOT a lifelong disease like Wegs. In any case, we WOULD miss you on the forum and I DO hope you'll keep in touch even if you don't have Wegs!

[BookNut]

Thanks to all of you for your warm well-wishes. I sure hope it is not Wegs - and is something treatable without such scary meds. You guys are all so brave about the whole thing. I will definitely keep you posted and will check in regularly - even if I end up having just a reeeeeaaaaaly long cold, a fungus infection, or some bizarre orphan disease!!

There is one thing I found out...I would have been shifted to another doctor by the office staff, had I not mentioned Wegener's. Small comfort, I know. But a rare disease does perk up a doctor's interest and perhaps open some doors. Persistence. Don't take no for an answer.

Oh - and Anne, about my PCP... When it became obvious that my pulmonary problems were not clearing up - she sent me on to a lung specialist, who turned out to be a real a$$. The fungus idea came up when she saw that I was not getting better with his "help".. After my hospital visit, I really started being passed from specialist to specialist and never got around to going back to her (my fault). It will be a sad statement on specialists I guess if it turns out she was right all those months ago. Gotta wonder why it took so danged long to even consider it as a possibility. Oh well. Water under the bridge - but I worry about other undiagnosed folks out there.