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