My visit with Dr Koening

[Nancy-S]

I'm in my hotel room and have had a little time to let things sink in. I got the news I wanted, but without any answers. Its a little frustrating. I had my inlaws with me to be listening ears. She was surprised to hear the lack of explanation for my life-changing symptoms over the last 14 months.

They looked over all my recent labs. I had a lot. They interviewed me for an hour. The only pain that was present yesterday was ear/eustachian tube. My lymph node on that side is swollen.

Dr Koening does not see any sign of wgs. He says wgs pain presents and doesn't improve. I have good days in between lots of bad days. I had a good day in the pain dept yesterday. But he doesn't have a reason for this on again off again migratory leg and foot pain. My ears look good. He ordered a CT scan to see why I've started with reoccuring infections. Ill get done in arizona. But looking into the ear and nose he sees no swollen, red tissue that would be aparent with wgs. The fatigue seems to be the big unknown. His resident suggested sleep. I tried to explain no matter how much sleep I get I'm completely fatigued. In bed 10 days fatigue. Dr K. said that he realizes its frustrating. About 90% of chronic fatigue complaints can't be explained.

Then there is the positive PR3 and CANCA. "You have this antibody. I can't guarantee you won't develop wgs. I'm confident to say you don't have active wgs now."

The plan is to monitor every three months for a year. And drop to six months after that.

I was terrified to start treatment. But I was looking forward to feeling better. I'm grateful to have some good news, but I've lost hope for a normal life. So I guess I've been humbled in the way that I can't tell my AZ docs they were wrong.

[Nancy-S]

I'm travling all day. So I won't be back here for a while. Id like to hear ur thoughts and will be checking in tonight. The Dr was nice and thorough. Our dads worked together, at the same place, for over thirty years. That was interesting.

[mishb]

Well this doctor is certainly more thorough then you AZ docs.

It sucks big time to not have a definitive answer especially when you know how lousy you feel. Good on the resident to tell you to sleep - yeah, up there for thinking buster :glare:

However in a great way, it could only be a good thing, Nancy, to not have WG - I wouldn't wish anyone to have it of they didn't need too.

What about - Anca Positive Vasculitis.......that's what mine now call it. (ENT still call it WG)

I hope you feel better soon. Take care and hey, get some sleep :laugh:

[Psyborg]

Are you on Prednisone? Wegs pain CAN be masked on Prednisone. Other affects I still had but high dose prednisone definitely made me feel completely different than without. I agree with Michelle in that I hope you don't have it, but I also can completely understand frustration in not knowing what is happening to you :(

[Sangye]

Nancy, I came across some comments that Dr Seo made at an appointment last year when I asked how some people can walk around with undiagnosed Wegs and survive. He said, "There are so many types of Wegener's activity-- severe, moderate, minimal (he called those "Wegener's Lite"), or maybe the person has borderline Wegener's, meaning the body hasn't fully developed the disease."

Maybe that will help you understand what's happening with you. If you're having the migratory pain it could be what's called "smoldering" Wegs. Not fully active, but not in total remission either.

[delorisdoe]

I am smoldering for sure. NOt as bad as fully active most days anyway.

[Al]

Names can mean funny things, Nancy. WG is traditionally called ANCA Associated Vasculitis ((AAV). Whatever it is you have, it is clearly ANCA associated, though there may be no active inflammation. But WG can also refer to the disease process that produces the damaging forms of ANCA, you a person could, using this definition, have WG without having active inflammation. (I.e., it is possible to have WG, but be in remission.) You have had, though intermittently, stereotypical WG symptoms, and, as Dr. Koening points out, you could, in fact, develop a full case, even if you do not nave it now. Finally, some forms of AAVs (like microscopic polyangiitis), are usually not associated with granulomas, but are mainly characterized by small-vessel vasculitis. There are, indeed, many variants. The point is, you suffer in some big ways that are very much in the same league with and the same type as full-blown weggies. I think it was good for you to get this report.

You say you are to be monitored every three months. How? And you talk about starting medication. Do you have a treatment regimen?

Al

[Nancy-S]

Oh Al, how I wish you could have been there with me. Better yet, be my doctor.

I feel like someone died. You know the knot in your stomach, numb all over feeling? I've thought a lot about the experience and decided I'm mourning HOPE. But the feeling comes and goes. I shake it off, gather myself and realize how blessed I am to be well in the eyes of Dr. K. After all, it was my prayer before heading north.

What I can't shake is the antibody I carry with me, and the complete different life I'm living today vs 14 mo. Ago. I'm terrified that people will think I'm nuts. Oh, and all the we'll meaning people with multi level marketing supplements that will cure everything knocking and calling. I really don't mind them, I'm just not quite ready for that.

I had a thought last night about asking Dr. K to call Cleveland and just get another persons perspective. My husband thinks its a terrible idea. He would like to wait until April and attend my second visit in Utah. I agreed.

Reading through the orders, they seem fair. Labs every 3 months. Chest x-ray for new symptoms, ct for eustachian tube. Neurology eval for tingling/numbness. Start anti-inflammatory and stomach meds to avoid issues from the first med. I don't think I'll take them. And I think no more pr3 and CANCA tests! They kinda laughed that I've had it run 8 times. "Its like they keep ordering it with the hope that will come back normal", said Dr. Resident.

[annekat]

Well, the part about Wegs pain presenting and not improving has not been true with me. During the time leading up to my Wegs diagnosis, my joint pain would come and go, and I've never had the kind of excruciating pain that some people describe. True that prednisone, and any above 5mg for me, can mask or eliminate pain. In any case, I understand your frustration, Nancy, and if you don't have Wegs, that is good, but to not have real answers is very disappointing.

By the way, Sangye, Dr. Seo's term "Wegener's Lite" cracks me up! Would that if we are going to have Wegener's, it would be the Lite version for all of us.

Anne

[Nancy-S]

Michelle, you crack me up! I wish I could have said that to Dr. Resident. Although, he was super nice. Not specializing in wg though.

I got up today with plans to take on the world...since I'm fine and all. Guess where I've been? Just know it involves a pillow. I'm reading up on C-ANCA, and just can't understand. I must be overtinking it and wasting my energy...what little I have.

[Al]

Now, Nancy, you know I can't be your doctor. Other than the fact that I am not, in fact, a doctor, it must be noted that I do not charge, and have been known to make house calls. I actually have a few more things to say--some may, in fact, even be useful. But I have a client in a few minutes, so that will have to wait....

Al

[vdub]

If Dr Koening says you don't have wegs, then I'd take that for gospel. He is very, very thorough. I would see no need to ask him to consult with Cleveland (he was trained at Cleveland I believe). I can absolutely assure you that if he suspected wegs in any way, he would have ordered many more tests.

My visit to him generated appointments with an ENT and neuro, plus an MRI and retesting of all blood work. I found them to be very thorough to rule me in or out. Fortunately, I did get a definite answer. Unfortunately, it was wegs.

It's frustrating not to get a definite answer, but be thankful it's not wegs.

[Nancy-S]

I am very very thankful I seemingly do not have wegs. Extremely. The only reason I considered asking him to bounce it off a colleague, well, there are two. One, I get the impression he would not be offended one bit. Two, he did train there. I think it makes it that much easier for him to simply make a phone call.

They wanted me to see the ENT and Neuro people, and CT scans. I declined. I was really worried about money. Sad, I know. If my husband was there, he wouldn't have thought twice. I'd probably just now be leaving Utah. Speaking with billing, today, I found out that there is a 30% discount for cash paying customers and financial plans/assistance from charities. My visit in April will do me justice, it'll be more of what you experienced I think.

During one of my hopeless moments today, I thought about how I would have felt had he dx me and started treatment. The feeling, in all truthfulness, would be the same. I can't win. Everything I read, points back to wegs. I just want my normal life back. I'm only 41, have children at home, a new grandbaby, and lots to do. This state of (un)health is not acceptable with me. So I read, and research, and read some more. I gotta pass the time on the couch somehow.

I did read today that C-ANCA, etc can also be positive in lymphoma and other cancers. I think that would have shown up on my blood work.

[vdub]

I'm no doctor (in fact, I think Sangye is the only real medical person on the site), but I think they do have a test for lymphoma. I suspect you have had the test at one point or another, but you should probably ask your doc back home to make sure. One of the first things they did to me was check for lymphoma and they actually took out 3 lymph nodes. I think it was a CT scan that showed my bad (questionable) lymph nodes. Believe it or not, getting the lymph nodes out was one of the simplest operations I have every had. It had no effect on me one way or the other -- no gain, no pain.

It was kind of an odd discussion with the doc on whether I should have the surgery to remove the suspect lymph nodes. He said I could just have them biopsied, but then if the biopsy came back negative, then he'd have to do surgery to confirm they were really negative. OR, I could have him just remove them. Uh, let me see? Do surgery now or do surgery three weeks from now? Yeah, some choice.

When I said "neuro", I meant neurologist, i.e. brain. Did he have you set up for a neurologist or nephrologist (kidney)? Wegs affecting the brain (neurology) is extremely rare, like 1 in 10 million with only about 24 known cases in the past 50 years. Most wegs in the brain is diagnosed post-mortem.

It is really too bad that you could not have taken full advantage of all the facilities at U of U. They are wonderful people. However, knowing Dr. Koening, if he thought there was even a remote chance you had wegs -- he would have insisted on the follow-on tests.

[Nancy-S]

It was a neuro for the numbness and tingling in my hands and feet. I provided him with excellent kidney reports from my home nephro. Whatever is going on isn't kidney related, kidneys function very well. Counting that blessing for sure.

Glad to hear about your lymph node surgey. Not glad that you had it, but I find it reassuring that its easy surgery. the one giving me grief won't settle down very long. Its pretty painful stuff.

I appreciate, and find comfort in your feedback. I felt the same way, had Dr. K been at all concerned he would have insisted on his recommended tests. Thank you.

[vdub]

Ah, yes, of course, I should have thought of the the numbness/tingling stuff. I just had a nerve conductivity test, so kind of dumb that I didn't consider that tract. Good news is that I just had mild carpal tunnel syndrome. Probably from using the computer too much.... :-) Wegs has a tendency to turn me into a hypochondriac... I'm getting better at weeding out what's wegs and what's just normal-getting-old stuff.....

[Al]

Okay, Nancy, a few comments:


I feel like someone died. You know the knot in your stomach, numb all over feeling? I've thought a lot about the experience and decided I'm mourning HOPE. But the feeling comes and goes. I shake it off, gather myself and realize how blessed I am to be well in the eyes of Dr. K. After all, it was my prayer before heading north.

Yes, Nancy, you would have to be over the edge to hope that you had WG (like the hypochondriac's epitaph: "I told you I was sick!"). I think what you were hoping for was a kind of closure--a definite diagnosis. Allow me to suggest that, while a normal part of the narrative structure we humans crave, "closure", has too much of a ring of finality for my tastes. Where there is life, there is no closure. In this sense, I can find a lot to rejoice about in uncertainty. I'm not sure that Dr. K. called you healthy, exactly, only that he couldn't figure out what ails you.
You do have some sort of ailment; that the best medicos in the world can't figure out what it is makes you....kind of interesting.


What I can't shake is the antibody I carry with me, and the complete different life I'm living today vs 14 mo. Ago. I'm terrified that people will think I'm nuts. Oh, and all the we'll meaning people with multi level marketing supplements that will cure everything knocking and calling. I really don't mind them, I'm just not quite ready for that.

There is "nuts" and then there is nuts. I would bask in the latter designation, Nancy. You are an oddity, for sure. There are some WG sufferers who are ANCA negative, and there are a few with other automimmune diseases, like Lyme disease, Crohn's, and Sjogren's syndrome, those these cases are unusual. ANCA positive almost always correlates with granulomatous symptoms, vasculitis, or both. What I cannot find is any quantification of cases that are ANCA positive, but not associated with some type of autoimmune disease, although those in remission from said diseases can be ANCA positive. Your ANCA tests are so regular they are no longer exciting. What I would want to know, I think, is a breakdown of IgG types. This is an unusual test, but perhaps more telling in your case. It provides a differential analysis of antibody sub-types.

As for supplements, yes, I know all about well-meaning friends. How little they know! There are a few--like fish oil--that are pretty good for a variety of reasons. Most, however, have no evidence to support their expense, and many may be quite inappropriate for WG (or WG-like) symptoms.


I had a thought last night about asking Dr. K to call Cleveland and just get another persons perspective. My husband thinks its a terrible idea. He would like to wait until April and attend my second visit in Utah. I agreed.

Again, there is that fleeting thought of closure. Better let it ride a while--though keep an eye on the symptoms.


Reading through the orders, they seem fair. Labs every 3 months. Chest x-ray for new symptoms, ct for eustachian tube. Neurology eval for tingling/numbness. Start anti-inflammatory and stomach meds to avoid issues from the first med. I don't think I'll take them. And I think no more pr3 and CANCA tests! They kinda laughed that I've had it run 8 times. "Its like they keep ordering it with the hope that will come back normal", said Dr. Resident. This is pretty complete, for a one hour consult! But, Nancy, what anti-inflammation meds are you planning to not take? This concerns me some. When you shed your pillow and come up for air, let's talk some more. ANCA are curious antibodies. here is much that no one seems to know about them, though I would be happy to go over what is known with you.

Al

[maria garcia]

Nancy if you have been positive for Anca and have these symptoms then I would say the symptoms are from wegs. Now if you don't have any inflammation affecting a major organ and will be getting checking so often then you are probably better off with no meds. You need to weigh it out. Meds are very harsh on the body so maybe waiting will be the best way. My daughters doctor kept saying her positive Anca was a marker and she was fine until she had a biopsy of her eye and proved positive to vasculitis. So don't freak out or read to much(thats what I did) your probably one of the lucky ones who has caught it in the begging and will have more control. See the positive and no your not crazy you are having wegs symptoms. My daughter has inflammation of the eye and nose and her inflammation markers are always perfect.
Just my humble opinion

[Sangye]

Nancy, my advice is to follow Dr Koenig's advice in regards to the meds, procedures and doctor consultations. I realize it may not be feasible for you to go back for the other doctors right now. But you could do the procedures at home and get the results sent to him.

Also, wait a couple weeks and request a copy of the notes from your visit with him. That will give you a better idea of exactly how he views your case.

[Nancy-S]

I'm up. I'm up. Actually, I've been up since kids got home. I didn't mean to come across so sad and pathetic. I have my moments. I'm the same as I was before my visit, except with some great feedback. I shouldn't ask for more.

Al, you are so right. It IS closure I'm looking for. You're view is beautiful, wise, and nothing but the truth (for me). Yes, please please talk to me about ANCA. I need to know about it, since it's all I know for sure. The medication is Meloxicam.

Sangye, I will do exactly that, on both accounts. Thanks for the great advice. I do want to be a good patient. I need to put stubborn and impatience aside and keep doing what I've been doing, one day at a time.

[Nancy-S]

Nancy if you have been positive for Anca and have these symptoms then I would say the symptoms are from wegs. Now if you don't have any inflammation affecting a major organ and will be getting checking so often then you are probably better off with no meds. You need to weigh it out. Meds are very harsh on the body so maybe waiting will be the best way. My daughters doctor kept saying her positive Anca was a marker and she was fine until she had a biopsy of her eye and proved positive to vasculitis. So don't freak out or read to much(thats what I did) your probably one of the lucky ones who has caught it in the begging and will have more control. See the positive and no your not crazy you are having wegs symptoms. My daughter has inflammation of the eye and nose and her inflammation markers are always perfect.
Just my humble opinion

I think of your daughter often, and keep her in my prayers. Thank you for the encouragement. It's helpful to know that somehow I can make sense of it all...someday.

[mishb]

Al, you are so right. It IS closure I'm looking for. You're view is beautiful, wise, and nothing but the truth (for me). Yes, please please talk to me about ANCA. I need to know about it, since it's all I know for sure. The medication is Meloxicam.

I was on meloxicam for nearly a year before WG diagnosis and it didn't even touch the sides to alleviate any symptoms.
Leigh was also on it recently and had a bit of trouble with it, so stopped.
- what I'm saying is to just keep your eye on it and if it's not working, let your doctor know.

[drz]

Unfortunately your situation is very similar to many others where they have pains and symptoms and no one has a clear idea of why or any definitive diagnosis to explain the discomfort. Many of us before our diagnosis of Wegs were in this situation. I saw lots of doctors for my migratory joint pain and nasal symptoms but got no relief. Only when after many months or a couple years of these problems did it flare big time into attacking my kidneys, ears, balance mechanism, eyes, lungs etc and then it finally got diagnosed and treatment began for Wegs. I don't know if a Wegs specialist could have diagnosed it in the earlier stages or not but now after treatment and finally gaining what they call a drug induced remission some residual signs and discomfort can occur and I can still be considered in remission by lab work.

I have a relative who also has some kind of autoimmune disorder with various symptoms and lots of discomfort but the doctors don't know exactly what kind yet so they are just trying to treat the symptoms to get her some relief while they try to sort out what kind of autoimmune disorder she actually has. I think this is often a common practice in the medical community especially as AI diseases are becoming more prevalent. Hopefully the treatment of symptoms and monitoring will help clarify and contain the situation.

It would be great to have a clearer pix now but on the other hand you are very lucky not to have such a severe case of Wegs that it might kill you but then make diagnosis very easy while it destroys your kidneys, lungs, hearing, vision etc. We are glad you don't have such an active case of Wegs now and wish you luck in getting some relief of symptoms while they search for a more exact diagnosis of your discomfort.

[Nancy-S]

7 years ago I had an AFIB episode that put me in the hospital for a day. Its a common issue for me, and common in general. The docs stopped and restarted my heart...but ultimately it didn't stop pounding over 200 until 3hrs later. My point is, the anti inflammatory has a warning for heart issues. I'll seek out a diff med that's maybe a little safer.

Thank you for your encouragment and compassion. I've fallen in love with you all, so I wont be going anywhere. I won't be able to help answer disease questions but I may be able to assist someone somehow. Each one of you contributes something unique and valuable. Keep doing what you're doing, this community is very special because of you. And your smiling faces with each post, or pet pics or scenary or favorite character, brightens my day each time I read a thread.

Bless you ALL!

[Al]

The cardiac episode sounds scary, Nancy. Don't blame you for being suspicious of the meds.

I haven't forgotten that I owe you an exposition on ANCA. I promise you I will get to it, though I might need a nap or two first....

Al

[vdub]

Actually, if you just google "ANCA" and go to wikipedia, you get a pretty decent explanation.
Anti-neutrophil cytoplasmic antibody - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Anti-neutrophil_cytoplasmic_antibody)

As you read through it, there are other links to more detailed information, for example, on "c-ANCA" or "p-ANCA". Eventually you will get more info than you ever wanted. I love the internet. :-)

[reb876]

Gidday all, To Nancy I wont go to indepth here, I was dx with wegs in dec 2011, with symptoms going back well over a year, For me wg progressed and went pearshaped in a matter of 2 months with my blood tests reading, my kidneys copped it all mostly, but all the aches and pains else where were dx for something else every time and the meds I was given were all wrong, The Point I am trying to get across is, blood tests every three months to me in my opinion is way to long for the syptoms you are having, every month at least woul make me feel a little more at ease, so you can read how your over all body functioning and health is going. I get my blood results every week at the moment and learnt what every single one meant of the net, you got to love the net... It is amazing how you can change what you eat and feel better just by knowing how to read your own bloods, or know how your kidneys are going ext ext. Just thought I would put my 2 cents worth in so to speak.

All the best Everyone

Steve

[vdub]

I hadn't seen the part about blood tests every 3 months. You are absolutely right, Steve. I had all the blood tests every two weeks for 22 months. Even now I'm getting the tests once a month. Maybe by this summer, I'll get down to testing once every 3 months and that will most likely be as low as it ever gets. Good catch!

[Al]

Gidday all, To Nancy I wont go to indepth here, I was dx with wegs in dec 2011, with symptoms going back well over a year, For me wg progressed and went pearshaped in a matter of 2 months with my blood tests reading, my kidneys copped it all mostly, but all the aches and pains else where were dx for something else every time and the meds I was given were all wrong, The Point I am trying to get across is, blood tests every three months to me in my opinion is way to long for the syptoms you are having, every month at least woul make me feel a little more at ease, so you can read how your over all body functioning and health is going. I get my blood results every week at the moment and learnt what every single one meant of the net, you got to love the net... It is amazing how you can change what you eat and feel better just by knowing how to read your own bloods, or know how your kidneys are going ext ext. Just thought I would put my 2 cents worth in so to speak.

Good, Steve. Most docs will loosen up on the test schedule once they think there is no active inflammation or immediate danger of same. (I am now on a six-week schedule.) But where there is a lot of activity, even when the cause is unknown, usually the program is tighter. In Nancy's case, the doc apparently could find nothing to justify more testing. Nevertheless, I believe Nancy needs to watch matters carefully.

Al

[Al]

Actually, if you just google "ANCA" and go to wikipedia, you get a pretty decent explanation.
Anti-neutrophil cytoplasmic antibody - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Anti-neutrophil_cytoplasmic_antibody)

As you read through it, there are other links to more detailed information, for example, on "c-ANCA" or "p-ANCA". Eventually you will get more info than you ever wanted. I love the internet. :-)

The Wikipedia article is, as you say, vdub, pretty good. But, for my tastes, it sounds too much like it is written by a pathologist for clinicians who might be unfamiliar with the term. Nancy may or may not get enough out of it to satisfy her curiosity. My aim is to provide a critical interpretation that is useful for the actual, on-the-ground, sufferer.

Al

[Sangye]

I think the Wiki article is great. Thanks for the reminder about it, vdub.

[vdub]

My pleasure, Sangye! Aside from you, I think wiki is one of our best sources of hardcore information about what is going on in our bodies.

When I'm looking up stuff on the internet, I tend to follow the Ronald Reagan mantra; "trust, but verify".

I know wiki is the brunt of some jokes as not being authoritive, but I have found, for the most part, their articles are well-researched, well-referenced, have good illustrations/pictures and are written in a consistent manner. Typically, I will read the wiki article, then look at their references and check to see that they referenced authoritive sources. For just general knowledge and a consistant source of information, they are pretty darned good and they are certainly a good place to begin your search to find the answers you need.

In this particular case, they get technical real fast, but they provide enough links such that you can get a good understanding of what is going on.

One of the things I like about Wiki is that they include links to their reference material I almost always read the references and look for dates to see when the articles were published or to make sure the article came from a valid research institution. I like wiki, but I think you can already guess that.... :-)

[Nancy-S]

When my primary care dr. called to say I had "vasculitis", of course I looked it up and read lots. The first two sites that I read where Mayo and Vasculitis Foundation. Mayo seemed to really downplay it, I thought. I think it even mentioned that some patients would have it, not knowing, and go into remission on their own. That seems wierd to me. At any rate, I've read and read, and plan to read more, so this article will be great. Al has a way with words, too!

[Nancy-S]

Gidday all, To Nancy I wont go to indepth here, I was dx with wegs in dec 2011, with symptoms going back well over a year, For me wg progressed and went pearshaped in a matter of 2 months with my blood tests reading, my kidneys copped it all mostly, but all the aches and pains else where were dx for something else every time and the meds I was given were all wrong, The Point I am trying to get across is, blood tests every three months to me in my opinion is way to long for the syptoms you are having, every month at least woul make me feel a little more at ease, so you can read how your over all body functioning and health is going. I get my blood results every week at the moment and learnt what every single one meant of the net, you got to love the net... It is amazing how you can change what you eat and feel better just by knowing how to read your own bloods, or know how your kidneys are going ext ext. Just thought I would put my 2 cents worth in so to speak.

All the best Everyone

Steve


Thanks for your two cents! Every little bit of info helps. Really, really...helps.

[ArlaMo]

Nancy - glad you're getting wonderful advice from all the good folks here. They were a lifesaver when I was first diagnosed! And still are, whenever I have questions!


Michelle

[Nancy-S]

Michelle- You, being my first wg contact, helped me a ton. I can't express, enough, how grateful I am to have run into your cousin. You've been kind and patient with me and all my questions.

Today I was contacted through FB by a gal whose father was recently diagnosed. She's looking for a specialist near Chicago. I refered her to this forum. I hope she makes her way over here, because you are absolutely right. Good folks, for sure. The other day during a moment of self-pitty I asked Paul (hubby) a question. Do you know what he said? "What would Al say?". I smiled, and repeated words of wisdom from my friend. The conversation ended.