EMG next week: Hi everyone, I am due to have an... - Myositis UK

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EMG next week

Parkerc profile image
7 Replies

Hi everyone, I am due to have an EMG next week to test for DM. Has anyone had this done? Does it hurt and is it reliable? This is my last chance at getting a diagnosis as my rheumatologist has said that if this test doesn't show anything, she will be unable to help me further. I still have the rash really bad and lots of aches and pains. Any advice welcome.

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Parkerc profile image
Parkerc
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7 Replies
Lintilla profile image
Lintilla

Hi Parkerc,

I was in a very similar situation six years ago - I felt the EMG was my last 'chance' at getting a confirmed diagnosis. I should add that I'd previously had a very high CK result from one blood test, and a positive ANA from another, but these were not consistent, and my bloods were mainly 'normal', ie no help to the Rheumies whatsoever. Other than that, I had very faint rash on eyelids, knuckles, elbows and knees and a noticeable shawl rash. I was wracked with excruciating pain, could barely speak (let alone walk) with exhaustion and was desperate for a diagnosis and treatment.

The EMG was a little painful, but nothing in comparison with the pain from myositis. I thought it was absolutely worth it to get my diagnosis (sero-negative DM), but there was a bit of pain and it drewn a tiny bit of blood. If you are needle or blood-phobic, I'd definitely talk it through with the neurophysiologist beforehand. It's a very skilled job, and they need you to sit still. In my case they needed to check a lot of sites (thighs, arms, shoulders), plus areas around my spine, and for me, this was the scariest part - I didn't want them slipping up there.

The good news was that once they found abnormal impulses, they were very distinctive, and they were able pretty much to confirm my diagnosis on the spot - I could have cried with relief.

My top tips would be: wear your best underwear, don't look at the needles if they bother you, and sit as still as you can. There's a little pain at each site for a few days afterwards, but frankly nothing compared to myositis pain - paracetamol would easily take care of it.

All the very best for next week, and it would be great to hear how you get on.

Parkerc profile image
Parkerc in reply to Lintilla

Thank you so much for taking the time to reply to me Lintilla. Your words are very reassuring. I'm not the least bothered by needles and have had months of chemotherapy in the past which involved a lot of needles. I think I have become immune to them. All my undies are the same boring Bridget Jones'! Maybe I should treat myself to some new ones in the sale before Thursday. I think I'm so anxious because I have been pushing for this test for eighteen months since I first got the rash and really want them to find something. This sounds perverse, but I'm sure most people on here know what I mean. It's thinking I know what's wrong and trying to get the doctors to believe me. If the test is all clear I will accept I have fibro and eczema, but at least I will know for certain. I just want some resolution to this nightmare I feel I'm trapped in. Thanks for your support.

in reply to Parkerc

I have had two, they are not painful , I imagine it’s a bit like acupuncture, the needles are very tiny.

It may be slightly uncomfortable but it didn’t bother me at all.

Parkerc profile image
Parkerc in reply to

Thanks Helen, this is very reassuring.

Jo-Goode profile image
Jo-GoodeAdministrator

An EMG is part of the diagnosis process for Myositis, so most of us will have had it. I have had them done 3 times (first time in my teenage years) and have not found it painful, just a little uncomfortable at times.

Parkerc profile image
Parkerc in reply to Jo-Goode

Thanks Jo, I'm feeling really anxious about it so it's good to know it's not painful :)

Eboracum profile image
Eboracum

Hi Parkerc , just wondering how you got on ?x

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