Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group what if they don't "see" AS??

i think you all posted while i was between starting mine and getting interupted and finishing mine.

deanne, i think i need new doctors, i have SI, hip, butt, rib, hand, feet, knee problems (not as bad as it sounds, as PT and physiatry have helped me get things under control), but none of the doctors i've ever seen have really ever shown any real concern with any of this. but now i think i am getting to a point where i can build a strong enough case and find a rheumatologist.

because i think you and i feel the same way, that iff we can prevent further damage, we want to be proactive. i've been trying to be proactive for 10 years and i think (but don't know for sure) that at least by getting each injury semi-healed up and trying to keep my muscles strong, i'm helping my body at least just a little.

sue

blester,

do you think the "trigger point" in my intercostal muscle that the doctor injected (at least that's what the doctor thinks she injected, because it caused a mild pneumothorax (10% collapse)) was costochondritis? is this the kind of rib pain and stiffness others have? i did look up costochondritis and tietze in wikapedia and i don't really match their description, but i'm now wondering if my rib cage trigger points are really a symptom of spondylo-

sue

sue

as is not 'seen'...it's a diagnostic evaluation, based on a point system...
(if he won't diagnose because Nsaids don't remove your complaints, he's wacked...it's only one point- given if
Nsaids work, not taken away if they don't work)

many 'old fashioned' rehumy's wont say AS without deterioration of SI joint along with other points.
you have the right to ask 'what diagnostic criteria are you using ?' there are ten or so criteria available

many people have the problem of waiting years to get dx...many dctors don't listen.
fish are jumping and the cotton is high

dear alohaben,

do you have the 10 points or so of criteria, or can you point me in the right direction (good website or paper).

you'd think this is the doctors' job, but...

i gave them 10 years, now its my turn.
that should be my new mantra.

sue

Sue,
This article www.emedicine.com/med/topic2700.htm has the ESSG and Amor criteria for diagnosis of AS, using the point system. The two criteria are a bit different. It also has the Diagnostic Criteria for Undifferentiated Spondyloarthropy Using Modified Amor Criteria.

If you score enough points, you can win a diagnosis. Yay!

Karen

Sue,

Many people with AS have one or the other. Try this link http://www.medicinenet.com/costochondritis_and_tietze_syndrome/article.htm is may explain the symptoms a little better and the diseases it is associated with. I refuse to go to rheumies here where I live because the ones I have been to in the past have little knowledge of AS and out of three only one had worked with a patient with AS. My best luck in NC has been through neurologist, neurosurgeons and orthos all documenting AS in their records, if I was a rheumy in this state I would personally turn in my medical license and find a job.

My PCP diagnosed the costochondritis after a through exam of my ribs from the back, front and sides. Part of the exam showed signs of tietze because of the tenderness which made me sit up after putting pressure two ribs in the back. They feel like they are floating and pressure applied causes severe pain causing me to maove away. The inflammation of the ribs and tendons near the joint cause cramps and spasms along with the pain.

As for trigger points it takes a trained person to determine to look for the correct diagnosis as one triger point can lead to several different things. Much like when I studied pressure points in the martial arts. Applying different amounts of pressure to a pressure point will cause a small amount of pain to a local area or do some real damage with even more pressure.

I would asked the doctor what her opinion is about the chance of it being costochondritis. There are ligaments, tendons and muscles also involved. She may have been hitting a muscle instead of getting to the base of the problem. I'm sure it would not be the first time a doctor made a mistake giving someone an injection if that is what has happened here.

Brent

Hi, deanne:

Do you mean that your rheumatologist is actually going to sit back and allow your damage to progress before making the obvious pronouncement of AS?!!

This is neglect, but it is not so benign.

Hey, I cut my thumb so get out the death certificate...EVENTUALLY, I'll bleed to death--under this guy's "care."

BUT, that's not so much what is bothering me. We went to a lot of trouble to publish information on PreAS and myriad other topics related to AS and especially treating AS.

You don't need reinforcement from doctors where you hurt or the fact that you hurt, but if you continue to go to these charlatans they will make you much worse. Not only because they will not even TRY to prevent your SIJ damage, but also because what little they do know about AS only makes them dangerous!

Put this guy out of your misery and go find a rheumatologist who will get you on DMARDs and especially a biologic straight away, so that you can stop suffering and stop the damage until diet begins to work in conjunction with a true DMARD.

Although I would go out of my way to avoid this particular rheumy, if you happen upon him again, please ask where the inflammation begins and where it stops: Is ankylosing spondylitis polite enough to only affect our bodies at one or two places at once, or is there also inflammation in places where pain might not be warning us--like around our heart or aorta?

Good luck to You,
John

HOLY COW !!!!!!!!!!!!
it's going, going, gone.

i have seen a post from Dragonslayer, a post with which i agree without reservation...dog bless.

note to sue ...please try the search mechanism here or just troll though an hour's worth of old
posts to find out who's who and what's what....all of those diagnostic criteria have been posted many
several times often in the past....these archives go back to about 2001, a lot of info, become an expert;
have depth of understanding and a firm grounding when you call that dude out.

john...i like the i cut my finger line, bravo.

well the bone scan will light ya up if you have any inflammation, thats is a good sign, you do have the signs for AS, what kind of arthritis are you already dx'd with??? that can be a factor as well, im sorry to say but it took 20yrs before i was diagnosed and by then my si's were totally fused my round spine was now square and spurs were growing towars each other, as everyone one has already mentioned it will be up to your doc about how to treat you, congrats on the wee one.....oak

me too...my doc didn't use any anesthetic last time (i'm pregnant, so wanted as little med as possible), and he was like "you okay, does that hurt" and i replied "actually, it feels really good!" i swear you could stick a bunch of needles in my trigger points and joints and keep them there for a good long time, and i'd be in heaven...LOL! thanks for the rib info..i'll look into it.