Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Help! Advice! First Rheumy appt coming up!

Ok all my AS friends out there, I need advice. I have my first rheumatology appointment coming up on the 27th and I want to be ready.

First, here's the gist of this. I have had AS for 30 years but was just dx'ed early last month. I was hospitalized for a week and had xrays, bone scans and blood tests (hla-b27 positive). The doctor who took care of me gave me a referral to a rheumy and now I have an appointment. I want to be ready. I have been told this place is a great place for arthritis patients. They are said to be very up on the latest and newest and are heavy into finding new treatments, etc.

Ok, I plan to write down a history of my symptoms and all. I'll also be bringing copies of previous dx of congenital birth defect (actual AS fusion), and of degenerative joint disease that I've had over the years. I will have all the records of this latest hospital stay and copies of xrays and bone scans.

What I need to know is what I can expect, and what I "should" expect. What questions I need to ask? Any advice, and examples of what went right or what went wrong during your visits to different rheumies, etc. Tell me your stories, good and bad so I can know if it's going good or bad for me.

The thing is, I have all this support from this doctor right now, along with a lot of evidence and I have this appointment. But a week after my appointment I will be moving back to Calif and will have to find another rheumy. So I really want to make the best of this now so when I get back and get another rheumy I will have a great file all together.

So, help me out here. And this thread may end up helping others who are getting ready for their first visit or are already seeing a rheumy who isn't helping.

In advance.... THANK YOU!!!

Winona


"Take care of the sense, and the sounds will take care of themselves"
Lewis Carroll

Hi Winona,You sound very organized. Writing things down is great, because it's easy to forget something important. Your on the right track.
Good Luck tomorrow............Hope

winona,

when i see a rheumy, i usually dont expect to much because to be honest, i think i know more about AS, its outcomes, treatments than they do thanks to places like kickas.

things i do ask new rheumys are

1. how many AS patients do they treat
2. what is their recommended treatment plan
3. request frequent blood tests that include cbc, sed rate, complete metabolic panel.
4. get baseline physical measurements of chest expansion etc

-ken

You are very organized. I wish that I was as together. The only thing that I wanted to say is that the Rheumy's that I have seen always want to do their "own" test to verify your condition. It's good that you have your X-Rays and other sheets. I was surprised when I have switched Rheumy's that each time I have to get a new set of X-Rays and blood work. It might also be helpful to browse the AS Pharmacy and get a list of drugs. I wish I had done that before my appointments so I could ask the questions about the medication side effects before having to take them. That way you have the upper hand in dealing with the medication they will give you. Just a thought. Good luck with the appointment.

Allison

I had a new Rhumey in April and did all of the things you are doing. I took medical records and past x-ray results, highlighted in yellow marker the important stuff to save him time, ect. The first appointment lasted ten minutes and he never laid a hand on me, it was a ten minute commercial for Remicade. He never read the first word of the medical records I brought in. I went back three weeks later and got the same 10 minute commercial and he still haden't looked at my records. I fired him and went back to my primary doctor for treatment of my A S. I hope you have better results. I have gotten great relief by joining the YMCA and doing heated pool exercises and using their exercise machines. My energy level has soared and I feel better than I have in years without any additional drugs. Your results with your new doctor hopefully will be 180 degrees different than mine were with doctor X. -----------good luck Cody

Hi Winona, your writing down of symptoms is a good idea, it's too easy to start telling them whilst thinking two or three ahead and if he focuses on something, it's easy to 'get lost' and think you've said everything. (Sod's Law says you'll only remember the bits you didn't say as you walk through the door at home!!)

The ARC website has an info sheet on what to expect from the Rheumy Department. With your experience a lot of it will seem quite simplistic, I was going to cut and paste the sections I thought may be more relevant to you, but thought I may as well put the whole link in as it may be of use to the newly diagnosed AS'ers who haven't got to the Rheumy Dept yet:

http://www.arc.org.uk/about_arth/infosheets/6257/6257.htm

I'd suggest you write another list, of questions, starting with "what should I expect from attending this clinic?" and what he expects from you - this would hopefully cover the 'ground rules' such as how to contact him if there is a problem between appointments.
You'll get a whole lot of suggestions here, so start writing them down, adding your own stuff. You'll probably want to do a bit of searching first and may end up rephrasing some, adding some and deleting others, but make sure that when the day arrives that you have with you the questions with you that you want answers to. And don't go deleting any that you may think a bit naff, if it's something that's niggling at you then it is important and as such it's also important to your wellbeing that you get answers.

Most Rheumy's worth their salt will spend time on a first consult, so aim to use it well. In a way it's a shame that you'll be having to move onto another one quite soon, but maybe that's all the more reason to use this time as a trial run, or should I say an audition - that was a great suggestion of Cheryl's!!! It can be an intimidating experience (depending on their people skills) so go in with the thought of having nothing to lose, and if it's not going your way then feel free to be as assertive as you like, see how far you can go, if you're moving on anyway you have nothing to lose! In the 'words' of one of my cats: push your luck!!!!

Take care,

Jan

Thanks Jan, for all that advice. I plan to do a lot of writing and searching.

I was sort of thinking the same thing about this appointment... as an audition in a way.

See, I have always been a fighter where my kids or other loved ones were concerned but always sort of wimp out when it's my pain. And most likely because it's my PAIN and I am sometimes just barely able to keep from falling apart so I don't have the energy to fight for myself.
But I really am doing pretty well right now. Coming out of a small flare still but getting around. So, I figure, what do I have to lose by being assertive or even aggressive with these doctors? My husband's insurance will be paying for this... and it's even possible we could have a small co-pay (although that hasn't happened yet- knock wood) so I figure... if they are getting paid then I should get a lot out of this. I'm working myself up to standing up for myself.
At this point, I'm sort of trusting my GP that this place he is sending me to is the best place around these parts. I wonder if there is anyway to check that out.
Last month my regular dentist thought the oral surgeon he sent me to was a good one also. But he turned out to be a horrible monster who sent me into the hospital paralyzed. (oral surgery without proper anesthesia) So, how can I be sure?

I hate this disease so much!!!

Thanks for the info, I plan to use all of it.

Winona

"Take care of the sense, and the sounds will take care of themselves"
Lewis Carroll