Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Good doctors vist.

Had a vist with reumatoligist last friday. It had been 9 months since i'd been. Any way it was a good vist I asked if he had heard of low starch diet for treating AS. He said so you think you might hav AS, I told him Id had xrays. He said they wouldnt pick it up and wrote out a form for an MRI. Whats been others experience with MRI, Iv had 6 years symptoms and wondering if it would be too soon to pick it up? Although didnt really get to explain idea behind no starch diet reumatoligist was open to foods causing flares of pain, and started saying that cirtus fruit and yeast containing foods are toublesom . He also did the test where two points are drawn on the lower back and measured. My extention was 2cm's. obviosly dont want any damage in my spine, but would like something to show up if this is what happening to me. I feel it would be a relief to know and hav something cocreate to tell others. When im sore and people ask and i tell them i hav and inflamatory process, that somhow caused by food i get very blank looks.

Hi, ReBA:

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Whats been others experience with MRI, Iv had 6 years symptoms and wondering if it would be too soon to pick it up? Although didnt really get to explain idea behind no starch diet reumatoligist was open to foods causing flares of pain, and started saying that cirtus fruit and yeast containing foods are toublesom

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For men, six years is at the low end of finding SIJ fusion, but for women this may not show up for many more years.

mris are nearly useless. The nuclear bone scan is much better at finding inflammation before fusion has occurred, but also fallible.

You also cannot communicate the intensity of the pains and if you could nobody would believe all that from a form of arthritis

I usually flared on fried foods, of which I was too fond in my early days--only later did I find out about starches--just nine years ago so almost nine years of remission.

Regards,
John

I have a two sons with AS. One has had symptoms for 8 years and the other for 5 years now. MRI no evidence of inflammation, Xrays are clean, and bone scans show no inflammation yet doc says it is probably early AS and I agree with him based on symptoms.

He has had patients with As for 20+ years with no xray evidence of fusion or inflammation.

He doesn't agree with the technical recommendations that say you have to have signs of Si joint damage or inflammation before diagnosis and says many docs don't agree with that or follow it.

If you look at the stats, put out by the makers of Enbrel, they show the majority of AS patients are not fusing. That is good news.

I had MRIs of SI joints and LS Spine very recently after 7-8 years of symptoms and there were no signs of inflammation or fusion.

The Nuclear Bone Scan of the whole body however revealed signs of sacroilitis of SI joints and osteo-arthritic changes in the knee.

Just a few months into my first big flare, at age 25, I had an MRI and bone scan, and both showed evidence of AS (xrays showed nothing). An MRI done a couple years later showed increasing damage. However, an MRI done in the past year (age 32) showed nothing. Not sure if that means enbrel was working, or the dude reading the scan was asleep at the wheel. Sure feels like something's messed up in there still though! Still the same old pain. But yes, *if* there's physical damage, an MRI can pick it up. A bone scan also does a very good job of picking up inflammation.

thanks everybody for these responses, they will be very useful, as the first rheumy did no tests, the second did xrays of the SI (and blood work) only. my fear has been, what if the MRI or bone scan show nothing. i wouldn't care so much if it weren't that i think i'm at the "i need to at least try drugs for inflammation and at least see if they work" stage.

knowing that there are doctors out there that dx and treat based on symptoms and patient history is very encouraging; i just need to make sure i keep looking until i find a doctor that fits into this category (unless an MRI or bone scan show something).

its also somewhat encouraging that some people take forever to fuse. just wish this wasn't such a painful disease.

sue

Hmmmm it makes diagnosis difficult for HLA-B27 negative females to get diagnosed if dosnt show up in xrays or MRI's

Hi. I'm 37, was diagnosed with A.S. 12 years ago, and have just recently been told I do not have A.S. on the basis of lack of evidence in x-rays and a thoracic MRI. Otherwise I am HLA B27 positive, have CRP's of 20 - 60 range, have substantial pain and morning/evening stiffness.
I am confused. There seems to be a wide spectrum of criteria for diagnosis, depending on who one listens to. "Chronic pain syndrome" label is not helpful at all.

hi reba and stanny,

i agree with both of you.

and for now, my opinion is to just find doctors that help me feel better; giving me labels of things that don't come with treatment plans is just useless to me.

my stepfather's history with crohn's is one of the things that keeps me focussed on getting answers and not giving up:

my stepfather had symptoms of crohn's for 10-15 years before he was diagnosed. and when he was diagnosed, he had a mass of scar tissue in him the size of a grapefruit (his words, not mine) and the radiologist missed it on the xrays, his GP had to see it. within the next year or two after that, he had major surgery to remove a good portion of his small intestine. and around this time, the drugs they gave him were just terrible and did little for the disease progression, i think he was taking large amounts of prednisone. back then, they suspected crohn's was an autoimmune disease, but they weren't even sure of that. now they know its a spondy.

so, when i think about my situation. i think back to what my stepfather has had to deal with. i think some of us may be in a similar situation.

sue