View Full Version : vent about docs, and advice please?

09-08-2012, 04:21 PM
I didn't know what to call this thread or where to post it. I hope I'm in an OK place.

My problem: I have had it with rheumatologists who are so few and far between in this state that they can be downright rude and arrogant to their patients.

Some background: This past spring I was screened for ANA by my gastro and it showed elevated numbers 640 homogeneous I think it was. A month later, I am sent into a rheumatologist appointment, where the doctor gave me what I "thought" was a pretty decent listening to.. he poked and prodded some, and suggested I may have fibromyalgia. OK, I figured, I have always thought I had that. But then he sent me to lab for follow-up testing. According to the ELISA testing, everything appeared normal BUT I have extremely high-titer anti chromatin antibodies and borderline above average anti centromere antibodies. The rheumatologist, at the time, sent me a short note saying that my testing is normal and I shouldn't be concerned about lupus. At first, I thought good, but I had to review what those high titer antibodies were - the anti chromatin ones - and of course everything I have read about them is that they show in SIL or drug-induced lupus. I request a second opinion at this time.

(Here is the link to the thread I made at that time about the situation http://forum.wehavelupus.com/showthread.php?11929-Not-diagnosed-but-lots-of-questions)

Month later, I have pleurisy and ask to see this first rheumatologist again. He sees me and gruffly tells me that antichromatin antibodies "mean nothing." I leave, crying, because he was so uncaring about my situation. At the time I was in extreme pleuritic pain and didn't understand why.

I have been waiting for months to get a referral through for the second opinion, and last week finally made some grounds. I got an appointment date sent to me in the mail at an office two hours away, but after looking up some reviews on the doc (describing him as arrogant and a horrible human being, essentially) I call the office to be set up with a female doctor there, who appears to have better reviews. Also, she has an office that is at least partially local.

Two days ago, my primary care office calls to tell me that the male doctor (the one that I had originally had set up a second opinion with) had called there and talked to my primary, and that based on my labwork he doesn't support a diagnosis of lupus. This is after I have already switched to the female doctor AND have been given a second appointment date with her. Surprised, and confused, I called the rheum's office and find out that the man had CANCELED my appointment and that was that. I was dismissed, I guess, as not being worthy of being seen in person.

I am livid at this point. They have basically denied me a right to a second opinion and/or any follow-up labwork that may clarify the sky high chromatin numbers. I just want an explanation why my body is creating these antibodies, yet nobody will tell me anything. The first rheumy I saw summed it up that it was probably because I had taken a medication that may cause DIL (however, I took this med over a year ago and at the time only briefly). Does anybody know whether drug induced lupus can cause anti chromatin numbers to go very high and stay that way after only taking about 5 doses of a med that may cause DIL (it was an anti-nausea med, which I asked for when I had to take iron pills for anemia).

Phew. Sorry so long. Thank you if you stuck in there with me and were able to follow some of my mess. I sure do appreciate any advice or input here, if you have any. I am simply at a loss.

09-08-2012, 04:29 PM
Hi Jess,
It's always OK to vent here!
Many of us have had problems with arrogant rheumys. It seems to be part of the package for being one in most cases.
Can your PCP help you and refer you to another rheumy? Many of us have had better luck going to a teaching hospital, where the docs see "weird stuff" more often. Keep trying until you can find a doc who will listen to you and try to actually help.

09-08-2012, 04:37 PM
Hi Jess,
I'm just sending a HUG! I think that you have the right to a second opinion, or a third, and so on, until a Dr. can clarify what's up with your pain and labwork.

09-08-2012, 09:22 PM
( ( ( h u g s ) ) )

09-08-2012, 11:27 PM
Keep pushing!!!!! As Marla said, many of us have been in your shoes. It often takes a very long time to get your answers but don't stop until you are satisfied!

09-09-2012, 07:14 AM
Second opinion time-- even if you have to go out of town. And, by the way, that male doctor was a massively huge a-hole for canceling your appointment. I mean, you weren't even going to see him! But you should explore your options and see where you can find another rheumatologist.

Here's my second opinion story-- I started seeing a neurologist, who wanted me to see a rheumatologist. At the time, there was only one in my town. So, armed with my neurologist's opinion that I had a connective tissue disease and dermatologist's reports that my skin biopsies were obviously autoimmune/lupus-like, I go to the rheumatologist, excited to finally find out what's wrong, or at least get treatment.

He spent about an hour randomly poking at me, and going "hmm," and finally, as I was starting to cry because I realized he was going to be useless, he said, "I don't know what's wrong with you, but I don't think I can do anything, I'm sorry. I have other patients to see." And he just left me sitting on the exam table, now sobbing. I felt so hopeless. He was supposed to be my expert, and he completely rejected me.

I rushed out of there sobbing, past the nurses' station where my neurologist's nurse sat, too (small, small town). When I got to the parking lot, I realized I'd left my scarf behind. I was loath to go back in there and get it, but it was cold, and I love that scarf. So I head back down the hall, and see my neurologist's nurse heading to me, scarf in hand. "What happened?" she asks, immediately hugging me. I told her I felt like the rheumatologist dismissed me, that he didn't believe me. She looked shocked: "Of course there is something wrong with you! Dr. Neurologist would't have sent you to him if there wasn't!" She got quiet for a second, and then sort of whispered, "Look, I'm not supposed to do this, but a rheumatologist who used to work here just returned to town, and people really like him. Let me get you his number."

Best. Second opinion. Ever. Thank god for that neurologist's nurse, or I wouldn't have even gotten the relatively mild treatment of Plaquenil that I'm on right now.

The new rheumatologist has been deeply fascinated with my case (he'd actually read my hundreds of pages of records before I showed up!), has researched rare diseases that might fit my symptoms, has presented my case at rheumatology conferences, and has pushed me to go to a teaching hospital for concrete diagnosis and treatment recommendations-- in short, he's not an arrogant a-hole.

So, I know going to doctor after doctor is exhausting. After that first disastrous rheumatologist appointment, I was resolved NEVER to see a rheumatologist EVER again. But one angel of a nurse -- this woman is getting a seriously big gift basket from me at Christmas -- pushed me to get that second opinion, and it has made all the difference.

Keep trying. Get that good opinion. You deserve it, because you deserve better than what you've been getting.

09-09-2012, 08:41 AM
Hi Jess,

I live in Maine too. I haven't seen a Rheumatologist for a few years now, as there are only a handful in my area (I live way up north), and I determined that they all basically suck. I have an excellent GP and Neurologist, and they have agreed to pool their knowledge and act as my surrogate rheumo. My GP actually said he'd never treated a person with Lupus, and that his knowledge was marginal. However he gave me his word that he'd "hit the books" in order to better help me, and he actually did. Imagine that! My next appointment with him, he literally had a copy of the Dr. Wallace Lupus Book in his hand. Now, I already had a solid diagnosis made years before by multiple rheumo's back when I lived in AZ, so they are not doing any real diagnostic work, just monitoring my various numbers and writing scripts for the proper meds.

I wish I had some real advice as to a good rheumo here in Maine, but I don't think there are any. You are not alone in your frustration. Like others have said, just keep pushing for the answers you need, and if some arrogant jerk of a doctor/rheumo blows you off or treats you badly, forget them, and move on. And, if you find a GP or maybe some other specialist like a neurologist who shows an interests in helping you, or as Derrie said "one angel of a nurse", stick with them!