Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Is it always arthritis ?

You know, Mig makes a very good point about range of motion. My rheumies are always blown away at my range of motion. It's still very good, despite the progression of my disease. My only answer to this is that I've worked very hard to maintain it. My background in dance training and pilates has played a key role in this to my mind. From all you say, it does sound like the rheumies you've met thus far are clinging to some very dated notions about AS, especially AS in women. With a couple of exceptions, it's been a while since we had a woman post about a recent experience in which psychology was considered the root cause. When I first signed onto KA some nine years ago, it was almost the norm to see this. Unless I've missed something, I had thought it was no longer occurring with any frequency.

I really would downplay the diet and focus on the testing required, as it really doesn't sound as if you've been properly tested. Time enough to get them to acknowledge the diet once they've figured out what is actually going on with you. You may have Fibro. Many of us do. I have a secondary diagnosis of Fibro, considered caused by longterm untreated pain making my body think it's in pain even when there's no cause. That said, my doctors don't all agree with this secondary diagnosis. So, there you are.

I hope your appointment is somewhat more satisfactory than you've had thus far, Joanne. It is so demoralizing to live on the diagnosis merry-go-round.

Hugs,

hi Inanna

I have just come out of my meeting with the Rhumatologist and it is all still swirling around in my head. One good thing she is sending me for blood tests and second good thing she is no longer presurising me to see a psychologist.

she recalled the carb thing from our last conversation and recons it could be celiac. I do not think it is this because I have trouble with potatoes and rice but I am going to have this test anyway.

She is also sending me for ESRand a few other tests, I will fill you in later.

I decided not to push things past this

I am going to see my physio fairly soon I am going to push her for the scan and x-ray

She wanted to do the inflamation test there and then but I told her I would prefer to eat 'normally' LOL, before I have the test

This means I am going to have to eat the poison for a week. I feel like crying just at the thought of it but I do not want any misreadings so I am going to have to do it

Anyway, I do not feel elated but at least I got something and just getting her off my back about seeing a psychologist has helped me gain some warm feeling inside

I am warbling here a bit, it is just because I have only just come out of there, but it went OKish and I am feeling more confident that if I keep my cool I can do this

Love Joanne

Hugs to you for your progress, Joanne!

Question to everybody else, isn't getting tested for HLAB27 an easy thing?

Does a doctor need to do anything more than just have some blood drawn, and tell the lab to test for it? Wouldn't SI joint problems and a history of pain like Joanne has be enough reason to ask for it?

Hi Dow,

Yep, the HLA B27 is done with a simple blood draw but I think it is a bit more expensive than your average ESR check, or at least it used to be. Up here, (a few decades ago now) when I had it done, they had to send it away to one specific lab in our province that was capable of doing it. That may have changed by now, however.

With a history of SI joint pain but, for instance, no sign of inflammation or loss in range of motion, I think some docs would think differently than others about jumping ahead with this test. It is not used for exploring what a diagnosis may be but more for confirming or supporting a diagnosis... if that makes sense. This is because 8% of normal healthy people are B27 positive. So yes, it is an easy test but will not tell a doctor much of anything unless in combination with other findings that seems suspicious enough to warrant further investigation.

I am not sure that ongoing SI joint pain, in the absence of any history or trauma would be enough reason or not, just on it's own? I personally doubt it but it may depend on the doc. In combination with a female who has been previously dx'd with Fibro, I would want it checked.

Checking ESR and/or CRP should come first, imo. Ah, but what do I know!

Yes your right mig in the UK the blood test is done at certain labs so is more expensive.

Kevin

that does follow my history, ESR and ana and RF done back almost 10 years ago, CRP and ESR and HLAB27 done only 2-3 years ago and then after that some more tests that tend to uncover seroneg RA.

and for me they did HLAB27 because of the SI, overall joint enthesopathy, and gastrointestinal problems (so common for the spondys)

since joanne has the joint problems including SI, and GI problems, those things together should indicate HLAB27 testing, IMHO.

congrats on your progress today joanne

Most irrefutably, most absolutifical, significantilly, and Canadianitastical, a whole lot!

ty Dow

So my Mom, Alan ..and now you too! But I still know that I'd flunk the 'whole lot' exam!

I remember times when I would tell my mom that I thought that it was only a matter of time before people found out that I really didn't know any of the stuff that I was doing, felt that I was only passing school out of luck, or winning a silver medal in a downhill ski race because I didn't know how to turn or stop-

She would just say: "Well, you're fooling them pretty good so far!"