Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-21-2020, 11:11 AM #1
annabanana123 annabanana123 is offline
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So I went to see a new neurologist that my pain management doctor referred me to. She wanted to see if there was anything else going on in addition to the CRPS. He recommends another triple phase bone scan since my last one was a couple years ago, which I'm fine with. The other test he recommended is an EMG but my pain management doctor had previously said never to get one b/c it's insanely painful with no real benefit. The neurologist of course disagreed with that assessment and insists it's valuable.

so my question for y'all is did you have an EMG done and how bad was it? Is there a value in doing it in your opinion?
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Old 10-23-2020, 03:54 PM #2
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Quote:
Originally Posted by annabanana123 View Post
So I went to see a new neurologist that my pain management doctor referred me to. She wanted to see if there was anything else going on in addition to the CRPS. He recommends another triple phase bone scan since my last one was a couple years ago, which I'm fine with. The other test he recommended is an EMG but my pain management doctor had previously said never to get one b/c it's insanely painful with no real benefit. The neurologist of course disagreed with that assessment and insists it's valuable.

so my question for y'all is did you have an EMG done and how bad was it? Is there a value in doing it in your opinion?

Hello...

Yes, there is value in having one done. It will give your physician and yourself a answer as to if there is any nerve damage or pinched nerves and possible location.
I have nerve damage after having spine surgery. The EMG not only confirmed it, but also confirmed I still had a nerve being pinched by a Tarlov Cysts. The more information the better is my opinion.
Its not comfortable, but I don't feel its not intolerable painful either.

Best wishes,

Diamond Tiger<3
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Old 10-24-2020, 05:11 PM #3
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You might question the dr about exactly why they are wanting to do the EMG.
To check for, confirm or rule out a pinched nerve?

Has your RSD or symptoms changed or new symptoms?
Near or downstream from a joint or spinal issues in question?

Maybe do bone scan first and see what that shows?
Is the neurologist RSD/CRPS knowledgeable?
They may say they are.. but maybe not...

You might search our site to find past posts on EMG.. but our search needs more than 3 letters.. maybe EMG/NCV or EMG test, or spell it out...
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Old 10-26-2020, 08:37 AM #4
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Thanks all! I will do some digging. I asked the neurologist as to the point and he didn't really have a good one. I won't be doing any surgical interventions no matter what the test shows so I don't know if I'm going to bother with it. I am going to do the triple phase bone scan on Thursday because I can see value in that one. I sort of felt like he may be ordering it just to cross off a box rather than because he thinks it will help my case.

My CRPS is definitely getting worse but the locations it's spreading to aren't even the ones he wants to check. And the fact it's spreading should be clue enough that any nerve damage isn't isolated to the original site(s) of the CRPS, right?

I dunno, I have an appt with my pain management doctor next week so I plan to discuss with her and cancel the test if she agrees with me. I just stopped the most recent flare which came from him just barely touching my limbs at that appointment on Weds. Today is the first day I don't feel flared up. And if that minor of a stimuli caused a 5 day flare I hate to think of what an EMG may do.
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Old 10-27-2020, 03:40 AM #5
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Hi Anna,

I can't speak to the EMG but I have had the triple phase bone scan.

However, my understanding of the bone scan is that the test results are not always conclusive.

If the test is positive, that is likely reliable for confirmation of CRPS spread. But you can also have a "false negative" for CRPS with the bone scan meaning you actually do have a CRPS spread but the bone scan isn't catching it.

But it is an easy test to go through and there can be value so probably a good idea to have it done.

All the best to you and please keep us updated!
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Old 10-30-2020, 11:05 PM #6
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My pain management doctor doesn’t see and reason to do them for RSD because of the chance to put a person in a bad flair up I have them an that’s what has happened too me so I would ask why they want it and is needed.
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Old 11-05-2020, 09:57 AM #7
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I talked to my PM yesterday and we are NOT going to do this test. It doesn't sound like it's worth the flare up. It won't change my treatment plan so it sounds like a waste of time, money and emotions. I bet the neurologist will be ****** but I don't care.
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