should I go through with bone scan?
 

I'm having doubts about having a bone scan done in a few weeks, and wanted to get some other opinions about whether it's worthwhile or not. Outside of the obvious pros (getting it out of the way, gaining insight into what's going on inside me) and the cons (having radioactive matter injected into my body, the inconvenience of it taking six hours with two hour gaps in which I have nothing to do and no where to relax), I would really appreciate your input.

I've read several articles and posts questioning the true value of this test in diagnosing RSD, and honestly I don't want to do it.

You responses are appreciated.


Tim

I highly suggest that you have this test. I was unsure before mine, but it ended up being the best thing I did in terms of receiving undeniable proof. Before the bone scan, I had a few doctors who knew about my RSD by talking with me and looking at the surface symptoms but there were still many more that needed a solid medical document. For me this test was valuable because of the letter I received, stating that the bone damage clearly caused by RSD appeared very advanced, and that amount would only be possible after years of the disease. In my words it basically proved to me that I really was speaking the truth all those years. Even when they tried to tell me it was nothing. I had been misdiagnosed and shoved aside for 5 years, and this was the test that proved everything. The results placed me on disability and continue to be helpful when it comes to seeing specialists. I have also recently been moved ahead of a long waiting list. So basically I think that since you have been referred, it can't hurt to go through with the scan. No matter how long you have had the RSD, they should be able to pick up something that will convince someone else. You never know what the results may be and the radioactive dye is the very smallest amount possible. You won't even know it's there.

bone scan
 

I totally agree! The bone scan was my only proof of what is going on!

Hi Tim,

I would get it. Especially if it is paid for by someone else. I forget the exact statistics, but they are about 60-70% sensitive which means that 30% of the time, or so, they are negative when the patient truly has RSD.

So, a positive finding is of value, a negative might be wrong. There ya go! Does life get any better than that? With regards to the ionizing radiation exposure, it is a short 1/2 life, low dose radioisotope so it it is of little consequence (although nothing in medicine seemingly is without occasional issues). Now, if they have been treating you for RSD and your findings are positive, it won't change treatment one bit. If they are holding back on RSD treatment and you have positive findings, then you potentially have much to gain. Otherwise, you're screwed! They'll use negative results to cut you off.

End result.....as Charlton Heston once said, "no one gets off this earth alive."

So you're saying if it's positive then it's status quo with the treatment I'm already receiving, and if it's negative then I could be screwed? I gotta say, that doesn't make getting the scan any more appealing. I read that the bone scan is actually only accurate 55% of the time, which is kinda disturbing. I'd love to not have RSD. But then I'd be faced with not knowing what is going on with me.

Truly sucky feeling right now.

Tim

I think I have read it is about 50/50 too. It depends a lot on how long you have had RSD - if there has been enough time for the bone damage to be done. I had one, and it was negative, but I've been diagnosed over an over by many docs as having RSD, so there you go.

HAVE THE BONE SCAN. I ended up at walk in care (pseudo ER) and the lady who saw me ( I refuse to call her an MD) waited two hours to see me, ironically when they were closing and came in with her purse on her shoulder and arms crossed and stated I did not have RSD and was simply seeking drugs. I am a retired Senior Master Sergeant from the USAF and respected member of the community who'd been living with the disease for two years already through diagnosis and treatment of several doctors. She claimed the MRI (of which I NEVER had one on my foot) did not show any indications of RSD. As all of you likely know, an MRI is worthless in diagnosing RSD. Your only option for a diagnosis is the bone scan and even then it's the absence of bone or bone loss that the use to confirm the diagnosis. So it is 50/50. But let me ask you this...... what do you have to lose besides a day of your life vs what you can gain, potentially confirmation that you can use in the event that you run into the same b**** I did. Or one like her. Tim, this disease is mind and body consuming. Do everything you can to set yourself up for the future. Get the scan, get all scripts through the same doctor and let everyone know that's what you want. It builds trust between you and you PCP and that's important when dealing with disease. Start doing your homework. I just went through a ketamine coma, yes COMA, trials are available in the states, I know I have been there. I am enjoying a 90-95% remission. I joined this board for one reason. I honestly believe God told me to spread the word on this and I'm trying to do so. When I came out I thought I was dead before I heard my wifes voice, God Bless her. You're in our prayers and be proactive not reactive. You cannot afford to be reactive with this one.

God Bless, Peace and remember our brothers and sisters overseas in harms way. Keep the safe and let them return to their families safely.

General
USAF E8 Retired

I would probably have it done, even though mine was negative.... the doc that ordered mine also ordered an emg... which also was negative. She was so sure I did not have RSD and was faking that she was nearly jumping up and down. I asked how I could fake swelling, cold, red, shiny, ridged fingernails, hairy area on arm.... she said if the bone scan was negative I did not have it period. I nearly ran out of her office and never went back. I went to Clev Clinic and my doc there doesn't order either test, considers them a waste of time.

But, if your lucky, and it is positive- it will help you prove your case.

Mine was done 2 months into having RSD. I wonder if I had one now, years into it, if the result would be positive. I am having a lot of problem with the bones in my feet getting stress fractures even though my bone scan that they give women is normal... makes me wonder if the RSD in my feet has left my bones weak there.

You folks are wonderful!!
 

I just want to thank each and every one of you for sharing your stories and encouraging me. I spoke with my pain doctor's office a little while ago to make sure it wasn't them ordering the test, to which their reply was "(My doctor) doesn't rely on that test to diagnose RSD." I'm currently waiting on the ortho's office to return my call...Due to my post thrombotic syndrome, the blood begins to pool in my leg after 30-45 minutes, and I need a place to elevate it to relieve the swelling. So I'm gonna do it, I'm just waiting to see of they can do it closer to my house or accommodate me in some way, which they seem more than happy to do.

THANK YOU GUYS SO VERY MUCH FOR HELPING EASE MY ANXIETY! YOU GUYS ARE TRULY THE BEST! I THANK GOD I FOUND YOU!

All the best
Tim :grouphug:

There is being realistic and then there is being just plain cynical. When exact percentages are thrown into a conversation, it's not like they automatically apply to everyone. All of us have had to deal with the really bad side of things, but to assume that it will happen again before it even happens is wrong. The only way Tim will know what they will do with the results is by taking the bone scan. And with no assumptions or negativity before hand. Anything that results can be taken care of when it comes up.

We have been trying to get a diagnosis for my daughter since April. (I know that isn't very long in comparison to how long it took for many here.) One of the first things that was done was a three phase bone scan. This was not a long test. They only did one scan of each area. It showed decreased uptake in the suspected RSD leg. The radiologist told the orthopedist that if it was RSD you would expect to see the opposite. (decreased uptake in the right, or increased uptake in the left I assume.) Does this mean that the bone scan could have indicated RSD from the beginning and they just didn't know it? :eek:

I learn so many things here.

Thanks.

:grouphug:

Well I did it...
 

Well I had the triple phase done on my whole body, so now i'm anxious about what the results were. I did get to see what it looked like, and I noticed the two most problematic areas (my right knee/calf and right hand and wrist0 glowed much brighter than the rest of my body. I know that doesn't necessarily mean anything, but I'm still anxious to find out what it showed.

I'm also curious about another aspect of the scan...the part that shows the bloodflow. If anybody knows anything about Post Thrombotic Syndrome, can it detect that as well (veinous insufficiency)?

--Tim

Hi Tim - sorry, don't know the answer to your question. Just wanted to drop you a note to wish you luck with the results. I never had a bone scan. Sounds interesting....I hope your medical care benefits from the results.

Keep us posted.

Sandy

While I think that a bone scan is a good idea, what about a QRST test? I had one and it plainly showed my RSD. While it hurt some, it is noninvasive and seemed to settle the "question" of what it was that I had. Never saw muchh of this on the board, but have been away for a bit. It is a quantitative reactive sweat test. Essentially, they put these little suction cup things on your RSD and non-RSD areas and give a small electrical impulse along with the cup being filled with acetylcholine. It them measures your sweat response (don't ask me how-no idea). However, the differences were substantial between my RSD leg and my non-RSD leg. I will say that my RSD leg was very uncomfortable during the stim, but it was about 2 minutes long and I figured that if I can survive a flare for no good reason, I could survive this for a study to prove that I wasn't crazy. Anyone else out there have them? Not sure what the rate of false negatives are, so I'm not saying they are the be-all, end-all diagnostic, but it's out there.

Hi Tim and Welcome. I am so sorry for your health issues and the anxiety that comes with not knowing what is going on. I got RSD following surgery, but didn't know it for 4 years. In my 3rd year was diagnosed and treated for rheumatoid arthritis, even though my tests were negative. I disagreed with Dr. and he didn't listen to me. So I went to a sports injury group a couple states away and in 1 minute the orthopedic hand Dr. said RSD. Sent me over to hospital for nuclear med hand test you are speaking of. It confirmed his diagnosis, and immediately started on therapy. I didn't get full use of hand back because of wrong diagnosis and delayed physical therapy-have a claw for left hand, but at least can cut my food now and when rsd spread to other hand and feet and full body, the therapy kept me mobile and walking. I'm so thankful to the ortho doc in Oregon and the study proving rsd. I came back to Arizona and saw neurologist and ortho hand doc and worked hard on keeping mobile.
I have a wonderful Dr. and am grateful for my mobility. It's not easy-the pain-full body or generalized and internal RSD. It's been 15 years now and appreciate all the support and compassion here on NT. Hope you get answers and the help you deserve. I've learned a lot on rsdrx.com puzzles list-a 40 yr practice by an RSD Dr. He is retired now, but learn a lot from his website he left up for us to read.
Let us know what you decide to do and how it comes out. We care-one of your new friends, loretta