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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 07-28-2009, 09:41 AM   #1
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Join Date: Jul 2009
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BarbWC HB User
New RSD Patient = What Test for RSD?

While I've had problems for years, it just became official in April that I have RSD in my right arm. Last week I was told it's in the left arm and to be honest I'm not sure that my legs aren't also affected. I'm working with a neurologist on this and have had MRI's, blood tests, EMG's and bone scans. Everything pretty much shows nothing other than arthritis. She talks about sending me to Milwaukee as they have a lab that can do a test for RSD. Anybody know what TEST? How it is done? How accurate it is, etc.?
My husband is really upset about this whole thing and I'm trying to decide if the time and expense is really necessary as I've gotten confirmation from two neurologists now. I have a consultation scheduled to sit down with my family doctor and husband to discuss everything but I'm trying to decide if I should get this test or not. I means a 3 hour drive, test and 3 hours home again. Trying to dot the i's and cross the t's.

 
Old 07-28-2009, 10:44 PM   #2
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tigerlily11 HB User
Re: New RSD Patient = What Test for RSD?

Hi Barb,
Welcome to the message board, although I am sorry you are here because you may have RSD...
It might be a good idea to call your doctors office and ask for the official name of the test..once you know the name you can do some of your own research and then perhaps others on the boards will have some experience with the test and can give you some feedback or additional information!
When you call, be sure you speak with some one whom you know will be able to give you complete and accurate information about which test it is....
That's a long way to drive for a test that may not be necessary.
(I am wondering if the "test" is a ganglion block..which is done as a diagnostic test)
Try and find out the name before you meet with your family doc!!!

I have RSD in my left ankle/foot and lower leg as a result of injury and surgery. The pain is now in my right leg as well

I hope you are able to find out more information so that you can make a good decision.
hugs,
from Tigerlily

 
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Old 07-28-2009, 10:57 PM   #3
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Reiannasmommy26 HB User
Re: New RSD Patient = What Test for RSD?

First of all, you came to the right place. The people on the board are amazing, they will give you the best advice, a shoulder to cry on and a cheer for you when you had a good day. Tigerlily, is right hun you need to ask questions stand up for you health. You are in charge of that. I would call and ask what the test is called and/or if you have an appt with your dr before you go all the way to Milwaukee ask if it's really something you have to do and the reasons why you feel it might not be important thing to you. From what I know is there really isn't one test that can pin point Yes this is RSD, So Being a waste of time, money and energy that we really don't have. Please keep us updated. We will all be thinking about you.

 
Old 07-29-2009, 08:05 AM   #4
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BarbWC HB User
Re: New RSD Patient = What Test for RSD?

Thank you all. I do have a call into the doctor but haven't heard back yet. Unlike most of you my pain is pretty well controlled however the loss of use has started and I'm losing the small motor skills in my right arm. I have it in both arms with the right arm being worse. I have problems with pain and swelling in the legs so I'm really hoping it's not spreading there too. I've had all the tests and 2nd opinions so the RSD is the official diagnosis but they keep mentioning this test in Milwaukee. Everything I've heard is that there isn't a test for RSD so I'm hesitant to jump in and spend time, money and pain for something I already know. Rather spend the money on yarn. My PT is knitting. Now I have an excuse to be a knitting fiend. Just need to find out if yarn is tax deductible when it's physical therapy.

 
Old 07-29-2009, 11:17 PM   #5
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Gaollan HB UserGaollan HB UserGaollan HB User
Re: New RSD Patient = What Test for RSD?

It sounds like you've had all the "tests" for rsd, re the bone scan. There is NO test for rsd for pete sake! There are diagnostic tools but no test. The "tools" are emg's, mri's, bone scans, QSART(sweat test), thermography, blocks.

Blocks are not a test for rsd, they are a tool. The only thing a block can do is tell the doctor whether or not the rsd is SMP or SIP. SMP= Sympathetically Maintained Pain, SIP= Sympathetically Independent Pain.

The difference between the two is that SMP will give some kind of relief from the pain. The shorter the relief period the closer you are to SIP.

SIP does not respond to blocks and it often makes the pain go screaming off the charts. Further blocks could do serious damage and shouldn't be done.

Bone scans are best at "showing" rsd if it is done within the first 3 months when initial blood flow changes make it visible. After that time, it is highly unlikely to show rsd until you suffer enough altered blood flow to cause osteoporosis.

EMG's and MRI's do not diagnose anything to do with rsd. EMG's are used to check for nerve damage. MRI's are used to check for joint, muscle, ligament, tendon, organ damage.

Hope this info helps.

Hugs,

Karen

 
Old 07-30-2009, 11:52 AM   #6
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BarbWC HB User
Re: New RSD Patient = What Test for RSD?

Thanks. I was wondering why all the tests were pretty much negative - except for arthritis - and it was still RSD. That answers alot.

 
Old 08-03-2009, 10:40 PM   #7
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PrazB2JC HB User
Re: New RSD Patient = What Test for RSD?

Barb, I'm not sure of your exact location in Wisconsin, but I'm in Green Bay. All of these wonderful posters/moderators are worth their weight in gold. There is no definitive test for RSD. After two years of suffering and seeing countless MDs and undergoing countless tests (this included a trip to Johns Hopkins - what a waste), my neurologist recommended an anesthesiologist at a pain clinic here in Green Bay. This physician is EXCELLENT and one of my "walk-on-water" MDs who has helped tremendously with my pain. He is very knowledgeable in the field of RSD/CRPS. I'm saying this only as an alternative to Milwaukee if that's too far for you to drive. You can email me and I can give you the details if you're interested.

My heart goes out to you for two reasons, 1) knowing how difficult the pain can be, and 2) TRYING to make those around you understand something they cannot visually see; the latter is the worst part of RSD for me!

Barb, may God Bless & hold you in His Healing Hands!

Sherry

Last edited by PrazB2JC; 08-03-2009 at 10:43 PM. Reason: used incorrect words

 
Old 08-05-2009, 07:44 PM   #8
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BarbWC HB User
Re: New RSD Patient = What Test for RSD?

Just north of Black Creek. I'm very fortunate in that my pain is very manageble and not like so many of you. My biggest problem is the loss of use of my right arm. It gets a little worse every day.

 
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