Spondylitis Association of America Forums General Discussion General Message Board for Ankylosing Spondylitis and Related Diseases Competent rheumy in US to consult severe ASpatient

I am looking a number of rheumatologists for consultations, who can treat the most severe, dire, critical AS case in any part of the United states. I would like to know their qualification, objective and subjective qualities.

Objectively:
1) How competent in rheumatology field? What has he done to prove it?
2) What kind of reputations does he have amongst patients?
3) How well doctor review all your medical information?
- Does he/she take time to ask probing questions, which can diagnose your diseases and make proper recommendations?
3) How well do they discuss medical recommendations with you?
4) How thorough in providing best assessment and recommendations?
5) How well are they focus on taking care of you rather than taking of other things like pharmaceutical rep, other patient or person phone calls during consultation?
6) How interested are they in answering your questions and partnering in your care?


Subjectively
1) Respect for medical ethics, patient confidentiality and patient right
2) Doctor's professionalism, mannerism & respect toward patient
3) Office staff patient care support and professionalism.

Any recommendations? I am asking these questions because I had a 2nd opinion from hell, which was absolutely worthless and abominable...

I'm sorry about your doctor's appointment. There are excellent doctors out there, and I don't blame you for researching into who and where they are.

I love my doctor!! She is extremely competent. She diagnosed me right away with AS (a rarity it seems from what I have read here) and spent 45 minutes with me on my first visit. I was most impressed when she reviewed line-by-line everything in my chart from my patient information form to my own summary of symptoms I had typed up to all of my medical reports. She also asked questions as she read each line and took notes according to my answers. I have never seen another doctor do that before, but wish they all did.

I always go in with a list of questions, and she patiently answers them. I don't feel rushed. I definitely feel respected and, in the midst of all of this, we have gained a good repoire with one another. When I requested something on my last visit, she kindly obliged (shots in hip bursae) without thinking twice.

I feel she sees me as a well-informed, proactive patient and appreciates that. As far as treatment, she makes suggestions and asks me my preference. She is kind, ethical, professional and can share a laugh with me as well. When she talks to me, she has good eye contact and doesn't have her head buried in a file flipping papers. She never leaves the room during an appointment with me and isn't interrupted. I like her nurses, too. They are quick to return phone calls.

She is currently the president of the medical staff of one of the largest hospital systems in the area. This says a lot, and it is reflected in her level of care.

Perhaps because she is a woman, she has a clear understanding that women can have AS, too. It seems here in this forum so many have doctors who don't believe women can have it or they make them walk away feeling bad about the visit. Dr. Warner has a sharp mind and is very educated in AS.

Someone else in this forum goes to her as well, and he says the same things about her!

Legal,

I think your list is too complicated and doesn't leave room for human beings. BTW, I am on my 6th one and that doesn't count the 3 I saw while trying to get diagnosed. I think it is why it inspired me to keep up to date on the medical knowledged related to our disease.

One or two weren't "bad", but dismissed my questions or didn't seem "up to date". Now I know they are human and probably don't have time to read all the daily medical AS e-mails I get everyday but I must expect them to read some.

One of my early mistakes was, I was effected mentally by trying to get a diagnosis, any diagnosis. How I was dismissed, even told it was menopause a "natural" part of life effected how I saw the next doctor and next doctor. I adored the doctor who diagnosed me--the instant I walked into the room. But after 6 months he died, he was already semi retired but that too effected me.

So I tended to walk in with an stance that probably wasn't helpful to me. I would complain about the other doctors--which put the new one off. I see that now, but I was so angry that I didn't see how that wasn't helpful. I had to find a new way to express that I needed a second opinion with trashing the other doctors. I had to walk in without going through the whole travisty because that brought it all back,

Anyway, I like mine because she is similar to Cat. She calls me back when I call her. Her staff is wonderful. We discuss options and I listen to her opinion and she listens to mine. We are a team.

anna

Dr. Khan seems to be one of the leading experts. He is in Cleveland.

Otherwise check out this thread and perhaps post your query there. SAA will mail you a booklet with all the member-recommended doctors even if you are not a member - info is in the thread. They sent one to me and I am not a member (yet).

http://forums.spondylitis.org/ubbthreads.php?ubb=postlist&Board=3&page=1

Thank you both of you and all your input. I really appreciate your candor and advice. It sounds like you have wonderful doctors. Would you mind let me know who your doctors are, addresses and phone numbers?

My AS involvement is extensive from neck, rib cages around chest/lung/abdoment, arms, hands, wrists, feet, knees, entire lower body & spine. I need a walker. If I don't slown down the disease progress, I am going to lose an ability to walk or my ribs will fuse in my chest and spine as well as I may lose more breathing capacy.

My 2nd opinion doctor igonored my concerns and didn't even bothered to tell me his recommendations at the consultations or send me medical record even though I requested my record in writing almost 2 months ago. So I had to get it via my attending doctor. The 2nd opinion doctor said I should stay on course with biologic I am on even though it wasn't effective for me and go back on physical therapy, which was also ineffective & costly for 2 years and start ridiculous psychology therapy for AS treatment. I asked him to give some medical options because I think my AS is going to destroy my body completely but he did nothing.

Furthermore, my 2nd opinion violated my fundamental patient right by sending my medical record to unauthorized parties even though I explicitly stated that I want my medical record sent to me. I asked all those questions because the doctor I saw did the exact opposite of what I asked. It was basically the doctor from hell. It was from frustration, anger and betrayer because this doctor sits as a chair of SAA.

I saw Dr. Vance Bray at the Denver Arthritis clinic for the first time a few weeks ago. Although I had already been diagnosed he went over everything again. He check every knuckle joint and every other joint in my body. That was new. He measured my rib cage, he measured the distance from my hands to the floor when I was trying to touch my toes. He was very extensive during my appointment and when I told him I wasn't feeling as great as I had been we decided to add a medication to my daily routine. I liked my first doctor in Chicago but I felt Dr. Bray had a little more experience with AS. He is on the SAA doctor list as well. Good Luck!!

Dr. Warner is very hands on and will do a very thorough exam. The other thing I liked about her is when I had an "issue" arise randomly, her nurse got me in the next day.

Here is the information:

Ann Warner, MD
4330 Wornall Ste #40-II
Kansas City, MO 64111
(816) 531-0930

I can't recommend my doctor because I haven't seen her or received a formal diagnosis yet. But she and her group are well respected in my city by both fellow doctors (including the chair of peds rheum here at the children's hospital where I work) and by patients as evidenced by the SAA directory I referenced above. I strongly encourage you to re-post this inquiry there as well as read through others' posts to see who is recommended as a good fit.

If your doctor really did release PHI without your consent you should report it as a violation of the HIPAA laws. You should also report his behavior to SAA. Doesn't sound like a good representative of the organization.

Thank you everyone for your reply. I think I am going to repost again as y'all recommended.

I reported his behavior to SAA but there isn't much they can do. I can write a letter and they will file my complaint in their file for a record.

I have talked with legal and they said I can report them to medical quality control board. I am hurt and feel betrayed. It is already hard enough to deal with our disease, insurance problem, legal and financial pressure we get we get catastrophically sick but something worse happense when doctor makes it more difficult. At least, my attending doctor is exceptionally good so I am thankful. It would be nice to get more 2nd opinions to see if I could get little bit better. I don't expect miracle. I just want to slow down the destruction of my physical body just a bit more if there is a way. I don't think I am asking too much.

Sorry if I sound little bit venting.