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

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

[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.