Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Are your Rheumatology appointments constructive?

Of late I have noticed a lot of negative comments being made in social media with regard to the helpfulness of doctors appointments, particularly Rheumatology appointments. This got me thinking, surely all experiences can't be negative, and the positive ones are just going unmentioned?

So in order to put some light on the subject I’m asking for your help. I have made a quick (anonymous) poll, so that we can see just how helpful, constructive, or otherwise, our appointments really are.

Go to http://endlesstrax.com/2012/02/21/poll-rheumatology-appointments/ to vote. All additional comments welcome.

Many Thanks

my appointments are now. that's largely because i really prepare.

i make sure my "medical resume" is up to date, print out a new copy, and hand it to the doctor when i get there.

i have a small spiral notepad (2x4 in) that i keep in my purse and take to every doctors appointment.

i keep all medical notes in that notepad, changing it out every year, so at the end of the year i have all my medical notes for that year in one place. i record the date, doctor's name, bp and weight at the top of each page. if its blood work or imaging, i keep track of that as well, with the date and what the tests were for specifically.

then on one page i list the comments and questions i have for the doctor.
and on the next page i write down everything the doctor tells me of significance.

i also go in with clear goals in mind and that goes on my comments/questions page.

then i'm receptive to what the doctor wants to accomplish and that goes on the other page as i take notes as he talks.

then at the end of the meeting, i summarize in a sentence or two what he wants me to try between then and our next visit.

in essence, my doctors' visits have become very much like any other meeting (i might have at work). and since i started approaching it like that, most of my visits are very productive. its only the doctors with whom i did not have good relationships with where the visits were less than productive.

a combination of reading the book, "how doctors think", and taking the best ideas from people here is what helped me become more efficient at the doctors.

Ditto on what Sue said. Go prepared! If you ask a question make sure it is answered to your satisfaction because that is what the doctor is being paid for.

Thank you all for your feedback.

Thank you sue22 for yours also, even if you have gone and just spoilt my next blog post by listing everything I had planned to say . Better think of something else to write now

If you haven't seen the latest results it's rather interesting so far. Plus more comments on the post.

It's interesting how the comments can often be a polar opposite of the results.

LOL, that's funny!

but its nice to know we were thinking the same things

no one will see what i wrote except for the people here, so i'd say just go on with the blog you were going to write! i think a whole other group of people will find that.

Thanks Ricky, and thanks Sue, you've given me a lot of things to include in my own notebook. I've just started it, and it's sloppy!

Currently my rheumy is not very... well she's truly lovely, but I don't feel as if she wants to discuss with me. Or anything really. I have an appointment with a highly recommended, later this year. Very excited!

Short answer - NO. Because he doesn't want to see me again, isn't offering me any treatment other than NSAIDs (that GP prescribes) and thinks its fine for me to just deal with his physiotherapist as the only "specialist" involved.

I'd like to think I could use Sue's "meeting" approach, but in reality there isn't enough time in the appointments I do get (GP, etc) to make that work either. If I started again with someone else, I think I'd want to be giving them a 100 page "briefing document" first!

that was me with the first few rheumatologists. so yes, it does matter that its a doctor that believes we have whatever problem they specialize in, and believes it needs to be treated (with more than just X if X is not working).



ah! that's where the "medical resume" comes in.

when i first started to write it all down, i had like a 10 page "summary" of my "story". it was great for me, but nobody else would have ever wanted to read that.

i got it down to just a few pages to send off to the NIH, but again, that wasn't really the best document either.

however, the medical resume has been incredibly useful. and really everything that is important for anyone to know is there (all medications i'm on, all i've tried with why i stopped them (either didn't work or the side effects), all my tendon and ligament pulls and tears with dates, misc symptoms (like the mouth and tongue sores, like the dry eyes, like the rashes, the gastritis and IBS), a table of blood work, a list of imaging with the dates, a list of my doctors, other "unrelated" health issues (i say unrelated cause it took me a long time and discovering spondy to realize that the GI and joint inflammation is directly connected).

the medical resume is especially great for someone like me who is so detail oriented. it forces us to get to the meat of it.

and a list of questions, bulleted points, again, makes us zero in.

at first, i wanted to tell the doctors everything, the whole story, and yes, we should tell the doctors all the symptoms as we are not trained to know what is and isn't important and is and isn't related, but that's different than every detail. like its important they know that my dq tendonitis was bad enough to need a cortisone shot and months of PT, but the rest of the story probably doesn't matter. or that i tore my bicep tendon pulling a cart (because who does that!) but the rest of the story doesn't matter. just enough of the details so they got the gist of how bad it was, nothing more.

i think too practice makes perfect (or at least better). i think for each rheumy I got better at explaining things.

but too, a good doctor can see through all the noise and zero in on the important aspects. that is a true gift though and so when i meet a doctor that can do that really well, i'm extremely impressed. but if someone can't, its our job to help them achieve that as much as we can as well. its a two way streets i think.

Oh dear, my inaugural post here is going to be a doozy, hahaha!

Hi all, I'm Julie, and I hate my rheumatologist! My first rheumatologist was incredible -- thorough, caring, pro-active. He was a certified naturopathic practitioner, along with being an M.D.! He was a believer in diet and supplements as an important part of treatment with modern medicine and new therapies. Silly me, I thought this was the norm!

And then I moved. The rheumatologist in my new city was lazy beyond belief. He worked three days -- Wednesday, Thursday and Friday. He was horrible about calling in medication refills. I learned that it took about 3 weeks of pharmacy faxes and phone calls to get him to respond so I had to plan accordingly. If you were having problems, his office told you to go to the ER; he would not fit you into the schedule no matter what. People were complaining to the hospital who recruited him and he left town.

So, I was referred to another one about 100 miles away. I figured that he couldn't possibly be any worse than the last one. Wrong! He is condescending, arrogant, and sarcastic. He asked me questions and would mock my answers or interrupt me if I didn't speak quickly enough. At the end of my first appointment, he decided to take me off all of my meds and see what happens. He told me I can't have inflammation because my labs looked pretty good. Um, so why were my ankles and fingers swollen? He didn't bother to examine me beyond looking at my hands and feet. And he didn't look at any of my previous medical records.

I will be calling his office first thing in the morning because I have been in excruciating pain all weekend. He needs to hear what's going on and own the poor decision he made. I can't even take a deep breath because my chest hurts so much. I'm walking hunched over because of the pain in my spine. I had to go to an urgent care clinic last week because of the pain and they scheduled some MRIs for me tomorrow.

I hate this rheumatologist but he's the only one in the area right now. I'm not well enough to drive to Dallas regularly to see another one.

The problem with me doing a medical resume right now is that I have absolutely no idea which bits are important and which aren't. It would be like doing a job resume when you have a really varied work and skills history, and don't have a clue what the job description you are going for is. It would be far too easy at the moment for me to either put in stuff that is completely irrelevant, or risk missing the really significant thing that might swing a diagnosis.

What I want is an old fashioned doctor who actually knows how to interview patients, follow up on significant things, and ask the right questions to get the additional info they need once they have their starting hypothesis. I should be able to just go into a doctor and say "my back hurts", and then have them follow some kind of questioning algorithm to not only get to the bottom of my back stuff, but to also draw out all the other potentially related stuff. I shouldn't have to second guess what info they might want or need from me.