Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group bone cancer screening

went to a new dr. today who once again does not believe that i have AS. my husband will not accept my diagnosis. doc wants me to have a radioactive bone scan - which is equal to ONLY 200 x-rays . I have had so many x-rays already i am surprised that i do not glow in the dark. please pray for me because the test is supposed to take 4 hours after injection - i have not done well previously with radioactive injections - and then i have to stay still on the table for an hour- as if i can lie down anywhere with multiple pillows. today was hell just getting to the dr. !!!! thanks to everyone for letting me vent - i can really , really ralate to the pain that everyone is going thru. Please say a prayer for me. thanks so very, very much.

hi maryalicia,

i was very angry when a rheumy in March didn't believe i had anything other than "mechanical" problems, but i had to let the anger go. i'm not sure i'll ever be diagnosed with anything systemic even though my physiatrists and PTs over the years who see me routinely know something is going on and they believe its rheumatological. so as frustrating as it is for doctors to not think we have anything, maybe the diagnosis isn't absolutely essential?

at least your doctor believes you enough to order this test, so he must be convinced you have something worth testing.

i think this test is the one a lot of people recommend for AS, so i wouldn't worry too much about its safety. but people who have had the test can tell you more about its safety.

as for the test. can you take a muscle relaxant or something to make the test more comfortable. i never thought twice about laying still for MRIs 5-10 years ago, but recently, its terribly painful to hold positions for any length of time. i take a muscle relaxant and lots of pillows and props with me for MRIs, the dentist, etc, and it makes it tolerable; not perfect, but tolerable. at first i didn't know if they'd allow me to bring all my "props", but i've never been given a hard time about it. they've all been very understanding.

good luck with the test. if it comes up positive, then you won't have to worry about whether or not people believe you have AS.

sue

Hey there, not sure by your title if you mean you're actually being tested for bone cancer?

But I've had bone scans done before just to check for inflammation - it's a fairly common test when AS is suspected.
About the scan - it does suck to try to hold still for that long. Take painkillers before hand if possible.
On the other hand, it will be good to get this done to help in getting a diagnosis. A bone scan is what got me my diagnosis.
Good luck and hang in there.

Ok, yes I am a little confused also...if it is a bone scan (Ive had several) then it will show inflammation if there is any in your body.

What your talking about being injected and having to lay on a table does not sound familiar to me but if your Dr. has ordered it he obviously is looking for something. It sounds like it would be stressful, can you see if he will give you a valium or something before the test to relax you a little bit? I do NOT do MRI's very well...have a fear of it breaking down and me getting stuck in it..lol I know it's terrible.

Your husband not accepting your diagnosis do you mean he doesn't want to accept that you are sick, or that he is not supportive of your illness? Either way I hope he will change his mind and realize that this is not something you have asked for or want. His support would go a long way in helping you deal with this.

I am sorry that you are in pain and having to go thru this, and yes I do know what you are feeling and have been there. Hopefully you will have compasionate people helping you, if you are in pain and they want you to walk or move and you can't or you need to go slower then you just tell them..Hey hang on, I am in pain it is going to take me a bit, remember they work for you.

Please let us know what happens and what the Dr says..if you need to talk I am here for you just pm me.

Hugs,

Lisa

Thats how I was diagnosed also. Good Luck! at least you will get some answers this time.

HI
My Dx was very clear when the bone scan was done. You may also find with your mind distracted from the pain ,you will probably do fine. It is amazing how our brains have the ability to block out pain when we have to . Have you ever noticed when you injure yourself, ir. sprain an ankle the A/S pain seems better ? I would also recommend the pain relievers prior to the exam , and just rememebr this will show if the pain your having is inflammation, and where it is. I truly lit up light a christmas tree with all the hot spots in my S.I , wrists, hips at the time.


Best Of Luck
Janet

I had a bone scan a few months ago. I fell asleep on the table. The tech scared me when he woke me up. After the bone scan they told me that I have AS. Like I haven't known that for 20 years. My neurologist ordered an MRI. After the MRI they told me I have a lot of inflammation so I should get a bone scan. The bone scan said I have AS.

Mary Alicia, a nuclear bone scan really is a great diagnostic tool. If there's any inflammation going on anywhere on your body, it will light up like the sun at high noon in Texas!

The staying still will be very difficult, I know. Hopefully, they will let you move around between scans. I've had two now and I've never been pinned to the table for a full hour. It was pretty darned uncomfortable, tho. Also, don't drive yourself there. I've found that the radio-active injection makes me feel slightly wonky for a while.

Hang in there. We're pulling for you.

Hugs,

Mary Alicia,

Sending thoughts and prayers your way and hoping the scan does the trick in finding you a diagnosis. Is hubby going with you to the doctors during your ordeal of being correctly diagnosed or is he just having problems with the fact of it possibly being AS? Hopefully he will be more understanding as the doctors get their jobs done and get some kind of treatment started.

I've never had any problems with the radioactive test I have had in the past, but have seen other family members have reactions or get sick from them so I hope this one is not as bad as the previous.

Brent

MaryAlicia, I have been thinking of you and hoping things were beginning to get better for you.

I am so sorry you are having such a hard time. I have been praying for you.

When you can (and I know how hard it is) drop me a line and let me know what happens from here. I will be keeping you in my heart.

Hugs and Blessings.
Possi