Second EMG, need advice
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July 11, 2012 at 6:16 pm
It has been a year and a half since my diagnoses with CIDP and have been on IVIG every five weeks since then. I feel much better than I did, and am lucky IVIG helps, although I do notice a decline in strength the week prior to my treatment. Doc scheduled my second EMG yesterday to see if my nerves had improved. Long story short, she said after a many shocks to my left leg that she didn’t think the machine was working right as it showed a much worse response than my original EMG so she rescheduled me for this Friday at the EMG lab instead of her office one. I am so scared, is it possible my nerves are much worse even though I feel stronger. I know she was blaming the machine, but wondering if she really think that or was just telling me that so I don’t freak out, even though I am. She did say if my nerves were really that bad, we would need to talk about a more agressive treatment plan, whatever that means. Has anyone else had a worse EMG even though they felt much better. Thanks for any and all advice, I feel so alone with this.
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July 11, 2012 at 6:22 pm
Sorry all, I meant the nerve conduction study, not EMG… I don’t think I have ever had an EMG.
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July 11, 2012 at 7:21 pm
I had only one NCV, when my legs were very weak and I was going downhill, so my experience doesn’t answer question. However, my advice is that you need the best information to get the best treatment, so you should welcome getting another test and should consider its greater accuracy a positive however it turns out. There are various treatments for CIDP and it is important to find the treatment which works best for your particular case.
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July 11, 2012 at 10:43 pm
Dear jgl,
I understand you are thinking that your doctor was lying to you when she said her machinery was failing.
Just ask yourself whether this assumption is helping you.
My advice to you is to believe that your doctor was telling the truth.
Don’t worry about results that may come, or not, from the second NCS.
You feel better, you say, so just be happy about that.I hope you sleep well and please keep us posted,
Regards,Willem
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July 13, 2012 at 2:08 am
People think that EMG/NCV testing is totally objective, when the truth is that the testing is carried out by humans, and the test results are interpreted by humans. I know for a fact that the testing is affected not only by the technique of the person administering the test, but also by the machine being used. Remain calm. Get the second test, and then discuss the findings with your doctor.
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July 22, 2012 at 12:47 am
JGL,
NCV instruments measure very small signals and so are susceptible to environmental noise. To do an NCV study well, the room where it is done needs to have electromagnetic shielding, to block the environmental noise. My guess is that your doctor’s office is not shielded. Even if it were, there are still several reasons why an NCV instrument might give bad data: faulty leads, a failed capacitor, a noisy power supply, and many others. As somebody who uses scientific instruments, I can tell you that they fail. It is good that your doctor recognized a possible problem and rescheduled you with a different lab.
Sometimes the correlation of clinical response and NCV results is not very good. Many people have GBS and CIDP with severe symptoms and nearly normal NCV. And sometimes, it is the other way around. As Goodney points out, the test is subject to interpretation and technique. The point is that the test is not the end-all, be-all in diagnosis, just one part of it
So let’s pretend that your nerves are in fact worse. You feel better than you have, in spite of that. Your doctor wants a more aggressive treatment schedule. Most likely, that would mean more IVIg more often. You said that in the last week between treatment, you start to decline. So if you have a more aggressive treatment, you might avoid the decline entirely. Sounds like a win to me, unless the treatment itself is burdensome.
How did the test go Friday?
MarkEns
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