Bulbar symptoms and clean EMG

[Oliveroldc]

Hi all. 30M from Ireland. Started getting symptoms 3m ago. My tongue has shrunk in size/volume by approx 30% and I am having difficulty swallowing liquids. I have constant twitching in my limbs 24/7.I have had 2 EMGs and they both came back with only seeing FPs.
my question from experiences is EMG accurate in detecting abnormalities in bulbar region? Many thanks to everyone on this forum and upmost respect to all battling this disease.

[Ellie]

Oliveroldc Hi there.

May I ask: who did your EMGs and which Neurologist(s) have you seen - is it that you don't rate them or trust them? Thanks.

[Oliveroldc]

Ellie I had the EMGs done by 2 different neurophysiologists in Dublin. Dr Sean Connolly(Vincents) and Dr Fiona Molloy (Beaumount)

It's not so much as trusting the neurologists as the actual test itself. I had read that it was not very accurate for bulbar symptoms?

[Ellie]

And the Neurologists? A diagnosis of ALS, whether bulbar or other area of onset, is not made on the basis of an EMG alone.

[Oliveroldc]

I was seen by Prof Niall Tubridy(Vincents)
ok, I'm in limbo at the moment my swallowing and tongue are getting worse but the tests are negative.... I dunno

[Ellie]

I was seen by Prof Niall Tubridy

I know him well.

And you've no relevant medical history?

[Oliveroldc]

Recent medical history is that I had myositis early last year due to a bad reaction to medication. That cleared up though started twitching in October and my tongue wasting started around that time.
I have had the UMN clinical test done(reflexes strengthetc) all were fine.

Was sent for initial EMG which done on my legs and arms. Only FPs seen

Had a second opinion EMG done in January on tongue and jaw and shoulder.Only FPs seen

I don't have any other medical history. Muscle wasting and swallowing are my chief issues.

[Ellie]

Had a second opinion EMG done in January on tongue and jaw and shoulder.Only FPs seen

Sonds like your Get Out Of Jail Free card.

2nd opinion in Beaumont or Vincent's?

And, as you know, myositis can cause muscle wastage.

You've been cleared of having ALS and I'm sure you've been told by the medical experts that you can scratch it off your list.

[Oliveroldc]

2nd opinion was in Beaumount

I wasn't told I didn't have MND. Only told that tests didn't find anything but ye your right I am back to the drawing board.

Thank you for your replies

[Ellie]

2nd opinion was in Beaumount

Beaumont is the National MND Centre. If your EMG on your symptomatic bulbar region showed even a hint of ALS, you would have had an ALS diagnosis from Prof Hardiman.

[Oliveroldc]

Didn't get to see her. Waiting lists like 1 year, but ye you are right I agree.

[Ellie]

Waiting lists like 1 year,

Nope, she usually sees people with suspected ALS within 2-3 weeks - she saw me in just under 2 weeks on referral from Tubridy.

[Oliveroldc]

I suppose that bodes well for me also that I can't get an app with her.

Thanks Ellie, my worry was that Tubridy was very quick with me and his expertise is MS which is why I went for a separate EMG in Beaumount.

[Ellie]

my worry was that Tubridy was very quick with me and his expertise is MS which is why I went for a separate EMG in Beaumount.

It was Tubridy who first mentioned that ALS was 'on the table' during my diagnostic process, and was further suspected by Connolly who did my EMG. Tubridy referred me to Hardiman, who saw me 9 days later - it was just a formality really. I was then under the joint care of Tubridy and Hardiman.

Tubridy has seen many cases of ALS in his 30yr medical career, he's a top rate Neurologist (Professor).

[Oliveroldc]

Thanks for the insight Ellie. I was unaware.
Will try to get to bottom of my issues but reassuring I have seen a quality care team.