That is the ideal situation, and is rare in the real world. Are you being seen at UT Southwestern?In an earlier posting you said there was a doctor at UTSW who knew about PAN, but you hadn't been able to make contact with him. Did you mean me? I am probably the one person here who knows about PAN, but I'm not a physician, so I'm not sure how much I can help you. Usually I see patients when the PCP or specialist want me to explain the immunology of the disease to the patient.
This dr.'s waiting for something to "jump out at him"? What the heck is he waiting for? Little PAN creatures to jump out and do back flips and cartwheels and say "We're ba-a-ack"? (LOL)?---------------------
I've often said that diagnosis would be easier if the disease wore a sweatshirt that said, "I am PAN." Even then, I'm afraid there would be some docs who wouldn't recognize it.
I had a bad experience with one of my rheumys on a recent visit. It has really upset me and I don't know what I should do.
I'm sorry to hear about your negative experience . I have met this doctor, but I don't know him well, so I can't comment on the brusque attitude you describe. I will comment that most specialist physicians have a standard list of questions that they like to cover during a first meeting with a patient, and a standard list of items they want to see from the primary care physician. This list would include items like biopsy slides, lab reports, X-rays, and MRI's.
Usually the doctor's office staff will contract you well in advance to let you know what you need to bring. It may be that Dr. Regan's staff forgot to notify you, and this was the source of his irritation. The definitive diagnosis of PAN requires biopsy evidence, so that is why the slides are so important. Even though your local pathologist may have looked at the slides, the specialists like to have their own pathology staff look at them, too, because there may be differences in interpretation between pathologists.
I agree with Bruce that you should hand carry all of your records, including slides, to the appointment. Some pathologists are very reluctant to let the slides out of their lab, and I know many who will NOT send them by mail or courier. Some labs are now using digital imaging microscopes so they can send "electronic slides" to the specialist by Email. If you do get the slides to take, you will probably have to sign a release indicating that you won't hold the originating lab responsible if the slides are lost or damaged.I agree with Barb that you should compose a letter to Dr. Regan indicating your displeasure with the visit, and listing your questions that are still unanswered. Even the busiest doctor truly cares about his/her patients, and wants them to know that they are important.
When I went to my GP with this recent attack of PAN, she wanted to send me to a skin specialist. I replied "Why? A nodule has been biopsied before, we know what this is, shouldn't I be seeing a rheumatologist to get prescription for prednisone?" She answered, "Go ahead and call one if you'd like." I explained that I might need a referral. She then said "I don't know anything about this disease, but if you think it's a rheumatology issue, then I'll call. Whom would you like to see? I know how to find breast lumps and decide if a cold requires antibiotics."
When I recounted this, the rheumatologist told me to call her directly as this was and always will be an emergency. Angry about a GP who wouldn't bother even learning about the disease, haven't been back for anything, despite having an ovarian cyst that needs looking into.
Myrna, If I were in your shoes, I would call the GP, thank her for the past service, and request a copy of your complete medical record. After I got the record, I would send her a letter apologizing for presenting her with a disease that was outside the scope of her limited "breast lumps and colds" practice. Personally, I would also unload on her for her lack of intellectual curiosity, since that is something that every medical student tells me is one of their driving forces, but you may elect to just let it go with a statement to the effect that you won't waste any more of her time, and you will take you BUSINESS to another provider.
It sounds to me like right now you only need two doctors: your Rheumy and a good Gynecologist to look at the ovarian cyst and to review the Pap smears. If you need routine services, the "Doc-in-the-Box" walk-in clinics are a great rapid resource.As you point out, most PAN patients know more about PAN than most doctors, so you either have to educate the docs or find someone else if the docs think they have all the education they need.