Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Doctors appt

Well after my first physio appt yesterday,I went to see my doc to ask her about why the rheumie has written me off,her reply was ,I'm not showing elevated markers and because there's only little showing on the X-ray on my si and hip area,it is not enough evidence to keep going,she's giving me strong painkillers. I asked her how long do you think it's going to last,she had a little giggle and said its something I'm gonna have to learn to live with! And taking painkillers is probably gonna be a long term thing! I just feel like no ones listening, I'm 42,surely this isn't normal. Quick question will the physio know if its mechanical or inflammotry? I'm now on my second bout of the friendly rib pain in two months,feel so crap!

Wow... sounds like you gotta find some new doctors that actually care about their patients. It's pretty common for this disease not to show any elevated markers. I myself have never had any elevated markers nor have I ever had anything show on an MRI or an X-ray. My rheumy still decided to put me on remicade though and said it was pretty clear, from my symptoms, that I had AS.

I doubt the physio will be able to tell you anything, really this is all your rheumy's job and it sounds like he doesn't give a crap. So ya, I'd be looking for another one.

Sonia.
Women show differently to men
Do NOT need elevated markerts, most 'markers' are normal except in RA when they 'tend' to show elevation - nowt set in concrete
Takes YEARS to show up changes on X-Ray and for MRI need Coronal Sagittal STIR tau-1, tau-2 with fat supression and lots of slices (fine takes) to show the inflammation, which MRI etc etc will do. Otherwise a nuclear bone scan will show up inflammation - I lit up like a C'mas tree!

Getta hold of a rheumy with AS sub speciality - meantime stick with physio so long as she sticks with helpful exercises.

Rib pain is par for the course. Costochrondritis, inflammation, enthesisis.

Please go to the Spondy research forum here on KA, please read all the papers put up there, starting with the EULAR Handbook, on page 1 or 2, was posted up by Mig and then follow with the Supplement to the Handbook. Then look for the paper on Women present differently to men in AS, adn then, and then - read the lot - even if it leads to brain ache! Might even print off some of em and give to the rheumy who is ***definitely in dire need of *further *education...

Change your rheumy.

My rheumy has turned out to be one of the most important people in my life. This will be true for the duration of my life. So, I have to concur with the others...get a new one.

My doctor is kind of eccentric and talks way too fast, but her own husband has AS. She knows the disease well both medically and personally. So, I'm very blessed to have her.

Just giving out pain killers isn't good enough - unless those "pain killers" are actually NSAIDs, then thats a bit of a different matter. Non Steroidal Antiinflammatory Drugs (NSAIDs) like ibuprofen and a whole of other different ones are actually the first line treatment for AS, because they can be excellent at knocking the inflammation. A lot of people make the mistake initially of thinking of them as just fairly mild pain killers and not taking them in big enough doses or regularly enough to do their job properly in dealing with the inflammation (which is a big cause of AS pain).

But - you definitely need to find doctors who know a whole lot more about AS than the ones you have currently got.

Yes, except for so many of us cemc we can react witrh vile gut problems. Still suffer since 2000 from the rot that those NSAIDs put my gut to. And a GP who could not care a monkeys together with several doctors here in France who labelled me as 'refusing' to take NSAIDs, except for the last one who has taken on board the EULAR information - so she should have, being part and parcel of the EULAR set up... NSAIDs crippled John's gut (Johm the Dragon Slayer) and too many others here (and elsewhere) who relied initially on NSAIDs. I dread the day I even took one tablet. Whereas the Celebrex was a boon until that eventually 'also' piled in with reactions, like GEDRD/LPRG from which I still suffer. But the NSAIDs were by far the worst, and Oh yes, SSZ, Azulfidine. No joke that stuff. Gggggrrrrr.

I was exactly in your position for 12 years.

Finally found doctors that knew you didn't have to have blood markers or a lot show up on imaging.

And now I'm on Humira and it helps so much. Also on pred starting today because sometimes even on a biologic one flares, but even before the pred, the flare wasn't nearly what it was in the past years prior to Humira or pred.

Don't listen to anyone who tells you that you are just going to have to learn to live with it; that's horse hockey!

Find someone who WILL help you.

PS Yes, a good physio should be able to tell if you have inflammation in your tissues. Mine could. It was a physio who taught me what it feels like.

For me, my joints / soft tissues get fluid in them and feel kind of spongy and/or marbly. My chiro explained how inflamed tissue feels to him as compared to not inflamed tissue.

So yes, a good manual practitioner should be able to tell.

It was my physios, physiatrists, orthopedists, etc, who told me I had an inflammatory arthritis and needed a rheumatologist to treat me and my inflammation.

Next...time for new Dr.s. That's the long and short of it. I have no "markers" either. These Doc's aren't up on their A.S. literature so I would find some that are. I was treated like a pariah too for a long time until I found the right Dr.s Find a good pain clinic with a Dr. who has treated A.S. before. Find a Rheumy who actually cares and is knowledgeable. Interview them first before you take them on as someone who is going to be a part of your care team.

She would not have been giggling long if I was in the room, I would have let her have a piece of my mind.

Doctors have a difficult job, but there is no excuse if that was her response.

More and more it is in our personal best interest to prepare for doctors visits, educate them, work with them and at times help them... I believe this community knows more about AS than some rheumies.

Best to you,

Tim