Help with my first official appointment with a WG specialist

[marta]

Hi gang, I'm posting this for a new friend who is having a hard time getting registered on here. She's been reading but can't post, so I offered to post this for her.

"

Help with my first official appointment with a WG specialist.

I have been ill for 14 months. Symptoms: walking on glass foot pain, roaming joint and muscle pain, extreme fatigue, hemmorages near my eustachian tube causing blockages, blurred vision, rash on my nose, elevated C-ANCA.

I've settled with a local rheumy after a few other appointments with strange Dr.'s. Each one is clueless. My current rheumy has a good personality and lots of experience as a rheumy, he's had one patient with WG.

He is monitoring me with a visit every three months because I have elevated C-ANCA. But...He directed me to my primary care Dr. when I had blood in my urine "it must be kidney stones". He doesn't think the joint pain is related to WG. He "wonders if it's fibromyalgia". The rash must be acne, he says. You get the picture.

Whatever this is, is NOT getting better. So I took it upon myself to get an appointment with Dr. Koening at the University of Utah. My rheumy doesn't even know about this... I'm feeling a little guilty.

My questions for you are:

For those of you that see Dr. Koening, what is his personality like? In other words, what is my best approach for excellent communication with him?

What questions should I ask? Is there anything I should insist upon before I leave his office?

I'm flying from Arizona for two days. I'm cash paying so I was hoping to get a consult with him, have orders sent to Arizona and get my tests run in Arizona where my insurance company will pay for the testing. Is there a better way to approach this?

I think that's all for now. Thank you Marta for posting this for me since I'm having a hard time registering.

Nancy"

[Al]

Nancy, I hope you get your registration issues resolved; this would be a good place for you. Marta called it an oasis. It is!

I cannot speak to the vagaries of your insurance, nor can I tell you anything about Dr. Koening, other than to note his reputation. You raise several other points, however, that stir my juices.

You hurt a lot, have classic signs of ANCA disease (including joint pain), and are seeing a doctor only once every three months? The only reason this is reasonable is that, as I understand it, you do not yet have a diagnosis. But that, in itself, is not reasonable under the circumstances. Clueless doctors are not an answer to your problems--especially when the clues are so readily apparent. The idea that blood in the urine "must" be a result of kidney stones is particularly egregious. There are many possible explanations, and some of the likeliest candidates, considering the other clues, are far more serious than stones. At the very least, he should have ordered an ultrasound.

There is no guilt, Nancy, in wanting a second opinion, or even in switching doctors. When you hire a plumber, you want him to do a job; if he is not doing it, you have every right to replace him. In contractual terms, doctors are just like plumbers, except that they no longer make house calls, and they take less responsibility for the outcome. On the other hand, doctors are not fungible commodities, like a can of beans to the grocery shopper, or a canary to a cat, or, to some extent, the plumber. Some have better skills than others in areas critical to your care (the job you are asking them to do), like diagnostics, knowledge of the disease in question, and the all-important bedside manner. It is, to be sure, unfair that your insurance will pay for a commodity clinician, but not for you to get the care you need. Note that "networks", so far as the insurance company is concerned, is about a business contract, not medical care in the sense that patients need it to be. But remember that this is your body, not the doctor's or the insurance company's, and you are allowed to give it the best you can.

How do you communicate with Dr. Koening? Again, I have never met him. But I can tell you that, in my experience, such consultations are usually longer than the typical office appointments, with much more discussion about your history and your symptoms. He will want to know what tests and procedures have been performed, what diagnoses have been made, and so on. Your job is to be truthful, including why, in your opinion, diagnosis X may be wrong. This is the downside of not telling your current doctor about the second opinion: He will not have forwarded your records. At the least, do take all the test results you have in your possession.

Tests, though, are generally quite fungible--a test is a test, regardless of which lab performs it, so long as the lab is accredited. However, some tests are not regularly performed by local labs and must be sent out to a larger lab.

I'm sure that Dr. Koening will be an excellent resource, though, given your insurance, perhaps not a candidate for permanent employment. For what it's worth, one of our members, Don, swears by (not at) the Mayo Clinic in Phoenix. Are they in-network for insurance purposes?

I'm proud of you for taking charge, Nancy. Please give us a report!

Al

[ArlaMo]

Nancy - You know what I think!! I'm so excited you're going to Utah!

vdub is one on this forum who has been to see Dr. Koening so hopefully, he will see this and give you some good info on that.

Love ya!!
Michelle

[aewaustin]

Nancy,

Ugh I feel for you. Getting sorted out with good doctors is the first step, and such a hard one. I also have kidney involvement and can tell you what I have learned through a few years of trials... Get a 24 hour urine, it tells more than the normal ones. The way that I was diagnosed at Cleveland Clinic was to pee in a cup and have the doctor "spin it" and look at it within an hour. That tells them a few things, the most important is if the cells are dismorphic (might be wrong on that word) but if they come through crinkly, and if so that means that your kidney is having issues. Also they will want to look for granulomas in your UA. Now I am not an expert, this stuff is all clear in my head, but when writing here the words might not be the exact right ones, but my interpretation. But get a 24 hour UA and make sure a doctor looks at your UA within an hour and after it is spun. I have to go to a kidney doc for a visit to get the spin, regular labs can't do it.

When you go to the expert have a clear list of your issues and a list of questions. I keep a diary on my symptoms and the amount of meds that I am on for the day I write in, highly recommend doing this, makes things easier to remember for times when you do go to a specialist. Or if you have a relapse a few years later you will have an idea of what happened last time.

At any rate if you have Marta for a friend you are in good shape, she has been through much of it so she can help out greatly, and I would be happy to chat with you about kidney stuff

Anna

[Dryhill]

Nancy, do make sure you write down all the questions you have for Dr. Koening, it is all to easy to forget something important. It can also be a good idea to have someone with you at the consultation, two memories can often be better than one.

Jim

[pberggren1]

I think vdub or someone on here sees Koening.

[marta]

I'm posting for Nancy again. And Nancy, it's totally my pleasure. I'm glad I can help in whatever microscopic way.

"Al, I agree with you and Marta...an oasis. I've learned so much reading through the forum. Most importantly I've felt the compassion members have for each other. It is a great place to be, indeed.

When my rheumy sent me back to my primary care doctor for kidney stones (which I did NOT have), I sat in the exam room of my primary care Dr. and shed a few tears from pure frustration. He scratched his head, and ordered an ultra sound. Since then I see a nephrologist every 6 months. I've only had blood show up in a UA twice since then, but it hasn't been consistent and the ultra sound looked good. When I complained about an ear ache, the rheumy said I did NOT need an ENT. He refered me to my primary care Dr. again. I chose to see an ENT anyway, thats when the ENT scoped my nose and found hemorrhages. I walked away with Nasonex, which really doesn't help. But more importantly I also walked away with a hand written note from the ENT stating his findings.

Dr. Koening will cost thousands less than Mayo in Az. Funny, eh? But that's the insurance network can-of-worms. My primary care is prepared to act on behalf of Dr. Koening, I sure hope this all works like I'm anticipating. It feels right.

Michelle!!! Hi. Thank you for stopping in. That made me smile. I want to share the story about how we "met" because it's nothing short of a miralce, but I'm worried about being long-winded. I'm going to do it anyway...because I think it's cool.

After learning the words Wegener's Granulomatosis from reading my lab report, I googled. I became confused and worried. Not sure what to do, I continued with my daily tasks.
A friend of mine was hosting a garage sale/fundraiser for her baby that was recently diagnosed with stage 4 cancer. As you can imagine, this brought much of the community together. While at the sale, I ran into a gal that I had not seen in years. She and I exchanged pleasantries, and went on our ways. That evening, we became "Friends" on Facebook.
Shortly after, out of desperation, I sent out a plea on Facebook. It was titled "Please Read to See if You Can Help Me" or something like that. Well... that gal read it. Her cousin had been recently diagnosed with WG. Her cousin is Michelle. She was my first real weggie contact. She has been helpful and kind. Her husband has even taking time to lend a hand. I'm really grateful to have been introduced to her. So, there you go. I call it a miracle because it was NOT coincidence.

Anna, I guess I've had both tests maybe? The times there have been blood was in the office (a dip?), and the clear results have come from a microscope (I think), but I still go to a lab for it. And I don't have menstrual periods (too much info? sorry) anymore. I only mention that because each time there's blood they always ask "are you having a period?" I always reply with "I don't have that anymore". Then proceed with "you might have to see a urologist for kidney stones". Whateva. It's all so old...I don't get disappointed much these days.

Thanks for the advice, everyone, on how to prepare, and your words of encouragement and wisdom. And thank you, Dear Marta, for helping to facilitate this"

[Al]

Thanks for clarifying these things, Nancy. About Mayo: I am guessing that their fees included a complete work-up (rather than a one-off consultation), which your insurance won't cover.

I've never met your rheumy, so I hesitate to to say anything. But, based on what you say, I have a problem with him. At the least, I it looks like you have a problem with him, which means that he may not be the right man for the job. All this might be "all so old", but how many of us have so many days to waste?

Please check back in when you learn what you can in Utah!

Al

[marta]

Al, you ROCK!!!! You know how I feel about you though. Now the world knows how I feel about you... ha ha . Thanks for answering Nancy's questions.

Nancy, if you need anything else let me know and I'll post again. I just wanted to bring this thread to the top in case someone missed it and had anything to add to a new person looking for wisdom from the old pros.

[Al]

Al, you ROCK!!!! You know how I feel about you though. Now the world knows how I feel about you... ha ha . Thanks for answering Nancy's questions.

Nancy, if you need anything else let me know and I'll post again. I just wanted to bring this thread to the top in case someone missed it and had anything to add to a new person looking for wisdom from the old pros.

(I wonder if she is using that term as a noun...?)

We're on your side, Nancy! We've got your back, if not, actually, your pain....

Al