Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group What to ask Dr about a "bone scan"

Hello all. Been reading for some time and would like some input.

I have "something" which causes me to stiffen up when inactive. Now at 55 years old its getting worse. I can function OK while moving, but just 10-15 minutes of sitting its difficult to get up.

My grandfather had and my 82 yo mother has AS. I am positive for HLA-B27. Aleve does work for me. Also have some IBS and dust/wind really irritates my eyes for days.

I have challenged a Rhummy for a diagnosis. I may not be ready to take a stout Rx, but need to know what I have so I can research it. Doc recommends a "whole body bone scan". Are there any recommendations on whether to have this, or suggestions on what I should be asking?

Thanks

Yes, its called a nuclear bone scan. Its good at picking up inflammation.

But wait til you're in a nice big flare and go in then.

Don't take any aleve for a few days so it shows up nicely!

I had it done. It showed the inflammation in my feet and wrists pretty well.

And at the time, the only thing that really hurt from the inflammation was my breast bone area...where the ribs attach there (the ligaments or tendons there)...it "glowed like a Christmas tree" there....

The radiologist even commented on it "Never Seen That Before!" and had me turn so he?/she? could get multiple views.

But other things like the SI and spine weren't flaring at the time and so didn't show up very strongly.

I wish I had waited and had it done on a day that my SI and/or neck were really flaring...a day that I could barely get out of bed....so that more of me would light up!

That's my only advice. Don't do like me and wait til a day when I was feeling up to the exam...go at your worst instead.

Make the test work for you.

And USE your family history! That's really important too in getting a dx.

Thank you Sue.

Can the nuclear bone scan differentiate between inflammation caused by AS, OA, RA, or other? Or does it merely say "yup - you have inflammation!"

It not only can't differentiate between inflammation caused by AS, OA, RA, etc, but it also can't differentiate between things like bone cancer and inflammation. What it is picking up, is areas where the bone cells are doing something different. Its not a good test to use if you don't have any idea what is causing the bone pain, but it is a good test to use to add weight to a suspicion of spondyloarthritis - especially if you show a pattern of bright spots in any of the expected areas for spondyloarthritis.

Just a heads up that you can have AS without a positive bone scan. Mine was negative and I had Inflammatory Back Pain as well as enthesisitis/arthritis in both of my ankles, and You have the gene, family history, and symptoms of inflammatory disease. Sounds like a form of AS or spondylitis to me.