March 19, 2018 at 10:13 pm
Has anyone had nerve testing done? My neurologist wants me to, but it seems kind of barbaric, and I don’t know what other information we would get that would change anything.
March 20, 2018 at 12:54 am
You haven’t given much information here. Neurologists treat medical problems involving the nerves, so of course they do nerve tests. The simplest, done by family doctors as well, is to test reflexes by striking with a special hammer. There are also electric tests: Nerve Conduction Velocity and the EMG (I forget what that stands for). They can also just stick you with a pin to see how you feel it.
Medicine is not nearly as “barbaric” as it was a couple of hundred years ago. If you have any kind of medical problem you should be thankful for modern medicine. If you have a neurological problem you need a neurologist.
March 20, 2018 at 10:41 am
Sorry for the lack of information. The tests recommended are nerve conduction velocity and EMG. I was just wondering if these additional tests give any new valuable information since I’ve been definitely diagnosed with GBS.
If I get information that helps with my treatment, then it makes sense. But if all it does is reaffirm the diagnosis, I’d rather not go through it. My neurologist just said he would like it done. I’m curious about what others have experienced.
March 21, 2018 at 5:14 pm
First of all, even though you say you have a definite diagnosis, you should accept these tests to establish a baseline.
Heaven forbid, later on if you get tests what can you compare them to?
Second, nothing barbaric about these EMG (Electromyography) tests. But then, I’m a barbarian. A little stimulation, a muscle twitch or two and a little needle poke with some slight annoyance as you use the muscle, or try to. So, grin and bear it.
Thirdly, CIDP, by definition has ongoing symptoms for over 8 weeks (GBS is 3-4 weeks with improvement) and CIDP usually does not improve unless ongoing treatment is given.
Look at this from another angle- How does anyone know it is GBS? According to Mayo Clinic GBS can be difficult to diagnose but your Doctor may recommend:
“Spinal tap (lumbar puncture). A small amount of fluid is withdrawn from the spinal canal in your lower back. The fluid is tested for a type of change that commonly occurs in people who have Guillain-Barre syndrome.”
Talk about a barbaric test, if you had a leak, you’ll already know what I’m talking about.
“Electromyography. Thin-needle electrodes are inserted into the muscles your doctor wants to study. The electrodes measure nerve activity in the muscles.”
“Nerve conduction studies. Electrodes are taped to the skin above your nerves. A small shock is passed through the nerve to measure the speed of nerve signals.”
March 22, 2018 at 5:02 am
Thank you. I’m a baby when it comes to things like that. I Made the doctor knock me out for the spinal tap! But it sounds like I’d better take the tests. The more I read, the more I understand how hard it is to diagnose and I may have CIPD. The tests aren’t scheduled for another three weeks, so I’ll just have to bear with the anticipation.
March 22, 2018 at 5:06 pm
Indeed, not to say you need to just roll over, rover, and say yes to the doctor. But, it may be equally important that the doctor run some tests to rule out conditions as it important to run tests that point towards a diagnosis.
Suggest you read this article. If you get asked for a membership, that’s easily solved, create one.
March 23, 2018 at 12:31 am
Had the NCV and EMG done multiple times on way to a CIDP DX. Others said they were horrible to do but I had no issues with them at all.
March 23, 2018 at 1:07 am
I would classify the NCS/EMG more as “uncomfortable” and “unpleasant” but not horribly painful. If you’re on this forum, then you have enough going on that the test will be worthwhile. Also, if you’re in the US, you’ll probably need NCS/EMG results in order to be approved for IVIG (if that’s the route you end up going).
March 29, 2018 at 12:23 pm
In my limited experience, a lot of it depends on the test giver. I had one EMG that was “uncomfortable” and another one that was torturous. For the latter, the neurologist was confused by the results and jumped to some pretty disturbing conclusions, probably because of the intense stress I was under. I’d say that if you find yourself in a similar situation, stop the test because the results won’t be beneficial to anyone.
March 30, 2018 at 2:38 am
I agree with B. The NCV/EMG tests were not pleasant, but just a matter of discomfort. I had complete confidence in my neurologists, so I did not object to either test. It may be that the insurance co. wanted them as well as the neurologists.
The EMG indicated that I had some axonal damage in my legs. I was glad to know that so as better to understand my condition.
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