Has anyone had an EMG while in PEM?

[Verity]

Has anyone here had an EMG while in PEM? I am probably having one in a couple of weeks. Was yours normal or abnormal, and if abnormal, in what way? Also, was it a needle or surface EMG?

Also open to any studies on this if they exist. I have found this one, which shows abnormalities on surface EMG in some patients, although it doesn’t report PEM status as far as I can tell.

I thought it was a known thing that we have normal EMGs, but I’ve come across multiple things lately that are “known” about ME that don’t seem to have any evidence for them.

 

[V.R.T.]

Has anyone here had an EMG while in PEM? I am probably having one in a couple of weeks. Was yours normal or abnormal, and if abnormal, in what way? Also, was it a needle or surface EMG?

Also open to any studies on this if they exist. I have found this one, which shows abnormalities on surface EMG in some patients, although it doesn’t report PEM status as far as I can tell.

I thought it was a known thing that we have normal EMGs, but I’ve come across multiple things lately that are “known” about ME that don’t seem to have any evidence for them.

I was supposed to have an EMG three years ago but never got it. Partly due to the prospect of travelling half an hour to be repeatedly shocked so that the data could be sent to a neurologist who looked at me like something nasty in a petri dish and clearly thought I was insane. Every time I tried to go I was too ill on the day.

Sometimes I wonder what it would have shown.

 

[Ryan31337]

I was supposed to have an EMG three years ago but never got it. Partly due to the prospect of travelling half an hour to be repeatedly shocked so that the data could be sent to a neurologist who looked at me like something nasty in a petri dish and clearly thought I was insane. Every time I tried to go I was too ill on the day.

Sometimes I wonder what it would have shown.

Unfortunately that is all too familiar. My neurologist at the time, a middle aged lady in a myopathy clinic, was about as pleasant as neurologists come - no empathy but professional enough, which is fine.

She sent me for SFEMG and EMG performed by her colleague, an old dinosaur Neurologist who made it abundantly clear I was wasting his time the moment I walked in. He literally said in a mocking tone: "There's no point you being here, but if Dr XXX asked then I suppose Dr XXX gets...".

There was zero care or concern during the tests either, he just grabbed my wrist and hit me with the shocks, no warning or explanation. Its was quite painful. Hopefully he's retired and no longer harming patients now.

Both studies were normal.

 

[V.R.T.]

Unfortunately that is all too familiar. My neurologist at the time, a middle aged lady in a myopathy clinic, was about as pleasant as neurologists come - no empathy but professional enough, which is fine.

She sent me for SFEMG and EMG performed by her colleague, an old dinosaur Neurologist who made it abundantly clear I was wasting his time the moment I walked in. He literally said in a mocking tone: "There's no point you being here, but if Dr XXX asked then I suppose Dr XXX gets...".

There was zero care or concern during the tests either, he just grabbed my wrist and hit me with the shocks, no warning or explanation. Its was quite painful. Hopefully he's retired and no longer harming patients now.

Both studies were normal.

Sorry to hear about your experience! Neurologists seem particularly disposed to treating pwME badly for some reason...

 

[ahimsa]

I had an EMG way back in the early 1990s. I don't know how much (or even if) the EMG testing technology has improved since then. But I doubt my experience is recent enough to be helpful.

My EMG had some vaguely abnormal results (I don't remember any details) but there was nothing that was diagnostic, just outside the norms.

The EMG was a waste of time for me and was quite painful in places (on my arm it was okay, but testing on my lower back and top of foot were excruciating).

I was grateful that the person doing the EMG was very understanding and allowed me to rest as needed between different test sites. He said all the people who did EMG tests had to go through it themselves. So he was aware that it could be painful. I wish this type of training and empathy was there for all medical testing.

Anyway, it was that EMG test which led me to be a lot more questioning and discerning about which tests I agree to do.

Edit: I looked up some websites that describe EMG and it mentions NCS testing (nerve conduction study). I think I had both done. I don't remember which of these tests was the one that caused so much pain.

Also, I was not told in advance about any pain so I was not expecting pain. I'm guessing many people don't have much pain but for some reason I did. And the guy giving me the test was sympathetic because he had felt some pain himself.