Going to a Major Center For a Second (or First) Opinion

[JanW]

This is some stuff I learned at the conference. The speaker on this session was Dr. Langford and Dr. Megan Clowse from UNC (young doc, seemed like a real straight shooter -- I was very impressed with both UNC docs I saw there and would encourage our Southern patients to go there)

Anyway, they want you to make sure that your bring as many records as you can, and that you understand that they will want to repeat the test. They want you to be ON TIME (they advised that people allow themselves time to get lost since you're going to be in a stressful situation anyway). They want you to be TRUTHFUL about your symptoms (many people over or under state). They do not want you to complain about your current doc; they will not offer you an opinion about your current doc. They want you to ask questions -- they do not want you to come with a laundry list of complaints and expect that they will respond to them all that day.

They want you to understand that you will see many docs and that you may have to wait, and to understand that their recommendations may be different from your doc's. They want to speak to your local doc, but acknowledged that many do not want to talk to them.

In this session, I felt that the researchers were at a loss to help some patients who are scared to death to ask their doc for records for fear they will be fired by their local rheumy (and some of the people have been) and if they are in a small town, they wouldn't be able to get anyone to see them. They stressed that if you see a rheumy who has five WG patients currently on the books, you are seeing someone who has a lot. They said that most have never seen a Weggie since med school, if then.

I have to say, I was surprised at the amount that people have had to fight with their local docs, for reasons that don't completely make sense to me because I live in a major city where I would have a lot more choice, I guess.

[pberggren1]

So JanW, when you say that, "They want to speak to your local doc, but acknowledged that many do not want to talk to them." Does that mean our local Rheumys or other docs usually don't want to talk to the big guys at the big centers where we would go for a second opinion?

[JanW]

Yes, this was mentioned by a couple of patients there, and the experts acknowledged that sometimes local doctors are difficult to get in touch with, or don't want to take their advice. I don't find that hard to believe at all, having heard the stories of some there were their local docs barely want to explain anything to them about this 'weird disease." I don't know how usual this is, but it's far from unheard of.

[elephant]

When I went to DR Carol Langford, I had about six questions , I could of asked more but I know it becomes overwhelming. But it really depends on the situation. How sick you are and so forth.

[elephant]

At first my local Rhuemy was hesitant to get a second opinion, but I kept asking her questions that she could not answer and then she was like OK. She is a very good Rhuemy (local). I felt comfortable with her and knew that we could come to terms with what ever.

[Sangye]

The JHU docs I've met (quite a lot at this point) have none of the typical doctor egos. They respect doctors who specialize in other areas/diseases and know how to work as a team. They're humble. Many local docs don't know how to work like this. Their egos are huge. I can't imagine what it's like for the VF docs to work with some of these local docs who think they know it all. They know how the patients are the ones suffering in the end. It must be very stressful and painful.

[elephant]

I wonder why the locals have a ego problem....not all but most. I think the specialist that we have are so confident that they don't have to be Egomaniacs.

[Sangye]

I think there are more docs with big egos out there than without. I think the major centers screen for them because they wouldn't work well in teams or with other specialists and that hinders the overall performance of the institution. I'm not just talking about Wegs specialists, either.

[JanW]

I agree with Sangye. Let's not forget that a hospital is a workplace like any other -- people are interviewed and part of the skill set they are looking for is that they can get along with colleagues. They also have to have the skills necessary to work with patients -- all of these centers are actively trying to gather as many patients as they can to support their research.

On the other hand, your local rheumy may be in business for himself, or he may be the senior partner in his practice. He chooses his associates on their ability to bring in business -- nothing more nothing less. If he is the senior guy they also have to get along with him, not the other way around. Also, your local rheumy is probably not a professor at the local medical school, where he is required to keep up to date, and teach residents and fellows who are going to pepper him with questions on a regular basis. He or she also wasn't inquisitive enough to devote his life to research (which is neither here nor there, but we Weggies need curious docs).

I hear "I don't know" from both of my wegs docs, and I have to respect that. I don't have to like it (who doesn't want the answers, after all), but they have never tried to bluster or make me think that they have all the answers. The other thing that I like is that they admit to making mistakes on patients and learning from those mistakes. Dr. L. even showed a mistake in each of his lectures.

[Sangye]

I think I've told this story before but it illustrates how Dr Seo and my other JHU docs work. At every appt I bring a list of symptoms that I've sorted into these categories: New, Better, Worse, Same. He knows me well at this point and just takes the list from me. As he reads it, he says out loud "Mine, mine, mine, ENT, Neurology, mine, I don't know, mine, mine, I have no idea at all, mine, ENT..." It's hilarious and also really saves time.

[JanW]

They were doing similar stuff at the conference too, Sangye. A question about lab results re: kidneys was asked to a mayo rheumy shortly after the UNC neph left the podium. He answered the question, but was very careful to say that he wasn't a neph and it wasn't his area.

About the only thing that my rheumy will do other that the general exam and bloods is look at my joints for swelling. He won't even look up my nose although, clearly, as someone in internal medicine he both knows what an inflammed nose looks like and has the equipment to do it.

[pberggren1]

My previous Wegs doc, rheumy, always looked in my ears, nose, and throat, checked my breathing and heart, and checked my joints and eyes too. She was good, I think?, until the last couple of months. She didn't give me an answer about my coughing up of blood and the CT Scan that showed cavitating nodules in the lungs.

I am just wondering. Can nodules in the lungs also be called granulomas? The reason I am asking I thought I heard my new doc call them granulomas.

I know that my new ENT is an assistant clinical professor at the local university. I know he keeps up with the latest trends, procedures, and treatments in the ENT field.

[elephant]

I am even nervous about calling Dr Langford, I have seen her twice. I just don't want to really bother her, but I know I have to make that call.

[Sangye]

Dr Seo routinely does the following at each appt: Looks at eye, ears, nose, throat, listens to heart and lungs, checks pulses bilaterally, checks hand color/temp, palpates abdomen and listens, checks joints, skin, joint ranges of motion, tests strength of major muscle groups and checks vital signs.

[Sangye]

I am even nervous about calling Dr Langford, I have seen her twice. I just don't want to really bother her, but I know I have to make that call.
You're not bothering her. You gotta make that call-- I can tell you're worried about flaring, etc... lately. You'll feel better when you talk to her.

[elephant]

Thanks Sangye for the words of wisdom and encouragement.

[DEE]

Elephant
im like you , always think im bothering my wg consult but when he rang me last week he said he wished i would
that he has patients with far less involvement who are always ringing him !!
that i need to keep intouch more no matter how small a problem i think it is
matbe its something we will have to get used to doing DEEx

[pberggren1]

You have to be able to call or e-mail your doc when you are having problems. That is one thing I am going to discuss with my new Wegs doc this week. So far he has been very good and calls me back in the late afternoon and sometimes within just a few minutes. He even has said a couple of times just come down to the office and talk. So this week will be some more tests with him to see where he stands with me going off all meds and with what JanW posted on here from the Symposium.