Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group First rheumy appointment - what to expect?

Hello everyone

I've got my first rheumotologist appointment coming up. This is to be tested for AS.

I'm nervous.

I made the appointment myself - didn't bother my GP asking for a referral. Had almost ten years of symptoms, my sister and father having identical symptoms and years of doctors just prescribing anti-inflammatories and painkillers.

I hope the rheumy doesn't think I'm a hypocondriac.

What can I expect?

Many thanks,
Meid

Hello, Meid:



Sorry, but if I answered this honestly we here at KickAS would NEVER hear the end of it!!

So...I'm not sayin' a thing.

Except WELCOME.

HEALTH,
John

PMSL!

I'll come back in a couple of weeks then and answer the question myself!

Hi Meid,
Being I'm in England I will answer.I understand what John is saying so give you a rough Idea of what to expect.You will probably have a physical examination and be sent for x rays and blood tests to start and then the rheumy will take it from there.
Nothing to worry about.Make sure you tell them everything you go through no matter how trivial it might seem to you.AS shows in many strange ways.

And welcome to KA by the way.


Kevin

Thanks Kevin. That's helpful.

Its probably irrational that I'm nervous, but its something that I've been brushing to one side for a long time. I guess I'm lucky that I'm not suffering constantly and I can brush it to one side.

I guess I'm nervous that he will

(a) say there's nothing wrong with you except madness
(b) there's something seriously wrong
(c) you need lots of tests (rubbing hands with glee as I'm paying privately).

Thanks again.

I found that the 'not knowing' was more stressful than the actual diagnosis. Most of my work-up (labs) was done by the time I made it to the rheumy.

He did a physical exam-checking ranges of motion, checking for stiffness, swelling, etc, of joints. Asked questions about family history, other illnesses. Usual stuff that any consultation doc would do. He ordered lumbar spine and SI joint xrays. He didn't come to a final decision on diagnosis right away, which miffed me at first, but my x-rays were essentially normal. It took 6 months for him to finally say 'inflammatory arthritis' although he's treating it like it's AS at this point.

If your case doesn't seem totally clear, you might not get a firm diagnosis on your first visit. At the same time, if your symptoms are textbook, he will still want to do some x-rays to see for sure. I can't imagine that you wouldn't have to have x-rays. If you have had some before, you might want to get copies to take with you. Same with lab reports.

But I'm in US, so all that might be totally different in South Africa. Anyway, good luck with the visit.

That seems unlikely...

on my first appointment with a rheumatologist, he scolded me a bit for being such a stoic and not complaining enough to get referred to a rheumatologist years earlier

On the other hand, don't expect to hear about all the treatment alternatives from a typical rheumatologist -- there are a few rheumatologists out there who keep abreast of the full spectrum of helpful treatments, but from what I've heard that is quite rare. I got the AS diagnosis from a rheumatologist, but I've learned a lot more about kicking AS here

Hi Meid and welcome to KA.

I truly hope you do not have AS, but if you do, at least it's an answer, yes?

I would suggest you make a list of your questions and put a star beside the three that are most important to you personally. Then hand the rheumy the entire list to look over, in case there's something on it that's medically important and requires attention.

There is a pain map on this site (I think it's linked off the first page????). Colour in the areas that hurt - perhaps you could use red for severe pain, orange for moderate pain and yellow for slight pain (just suggestions).

Also, write down how your pain is affecting you. Is it making it difficult to wash your hair, get dressed in the morning, put dishes away, walk any distance, sit for any length of time. Also note whether you have morning stiffness, and if so, how long it lasts.

If he's going to order blood work, ask what type and make sure he includes ESR (or SED), CRP and HLA-B27. The first two measure inflammation in the body (although not everyone with AS shows elevated numbers on the ESR test, the CRP is usually accurate), the third is a genetic tissue type that about 93% of people with AS have.

Also, I would take in a list of all the meds you've tried and whether they worked at all. Your pharmacist may be able to provide one from your files. Just put a star beside anything you are currently taking.

And do not be stoic about it. He needs to know just how badly this is affecting you. It took my first rheumy a while to realize how stoic I truly am, but the second one figured it out in a nano-second. The first rheumy is truly good and the only reason I have a second one is that he is an AS specialist who works with and researches biologic meds, as well as genetic links in AS. My first rheumy referred me to the second one when I got ulcers from NSAIDS and needed something more direct.

That should get you started. As I said, I hope you don't have AS, but if you do, you've just joined the best bunch of people on the planet here at KA! Especially if he tells you it's all in your head! Sorry, not really making light, but too many of us have heard that.

Hugs,

Kat gave you some great ideas. Keep a pain and stiffness log from now until you see him. Try to get copies of all your prior x-rays and resent blood tests and get them to him/her before you go into your appointment.

Good luck.
Donna

can't think of any other specifics to add, others have done such a thorough job.

as to what to expect? think it depends on the combination of a patient's symptoms and the doctor's approach. i've been to 4 rheumies, all four approached it differently. every time i thought i knew what to expect, thought i was prepared, the new doctor was different than the last. none of them made me feel like it was "all in my head" yet none could diagnose me either. the first 3 let me go saying "sorry, i can't help you, have a good life." but the 4th agreed to stick with me, so that's something. he's been really slow to prescribe meds to help me, but now on LDN and flector patches and though it doesn't prevent all the inflammation, i'm somewhat functional again. and i suspect if i were to go to a 5th rheumy, i'd have a 5th approach, as so many of my other specialists treat me so much differently, so many of them seem so frustrated that i can't find a rheumy to help me the way they feel a rheumy should be able to.

but if your symptoms are more clear cut than mine, blood markers more obvious, imagining more obvious, then it can be a lot easier. or if you find a doctor that bases things more on reported symptoms, you will probably find it easier. and even if not, even someone like me has never been made to feel like i was "faking it." they all felt something was wrong but were all baffled.

good luck, hope you have something that makes the dx obvious so you can get on with serious treatment that is actually effective.