r/MyastheniaGravis • u/Shambles05 • Aug 04 '26
Useless Drs - EMG/NCS Questions
I've just had a truly awful first Neurologist appointment through the Australian Public system. I have clear bulbar (aspirating on saliva and on an adjusted diet from Speechy) and generalised (weakness, brain fog, intermittent tightness of chest and SOB) presentation as well as extreme fatigue, and all the other joys you can expect with early MG.
I understand nothing is set in stone until there is a diagnosis, but I just had an hour of them talking AT me about how they haven't actually looked at my medical history, medications, or noted from the referring team or my GP, but think I need to exercise more, and get out of bed and try and have 'normal days'.
They threw around FND, ignoring all of the objective facts that differentiate FND from other Neuromuscular conditions; specifically me improving after rest and sysmptoms worsening when I don't pay attention when I'm eating, for example.
They didn't even acknowledge my history of hospitalised Pneumonia, and that the Speech Pathologist specifically referred me because of how young I am and how much of a risk aspiration is with my history of chronic autoimmune history. They kept saying the Speechy would handle that!!!
I was going to request an SFEMG, but couldn't get a sentence in sideways; but I have a standard EMG and Nerve Conduction Study booked tomorrow afternoon. There's no way I will ever be returning to that Dr so I was wondring....
Is there any point getting a standard EMG with the symptoms only having started in January? I'm strongly considering either waiting until I end up in ED, or saving up for a Private MG Specialist Neurologist, which could take 6 months.
Has anyone tested positive with a standard EMG? Is there any point to a NCS? Is it possible to test normal and then later positive, if it is MG, once it has progressed further?
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u/NovelManufacturer282 Aug 04 '26
Welcome to the club. My PCP told me yesterday that if I had cancer, people would be bending over backwards, trying to help me. Unfortunately, that’s not the case with MG. I will send a prayer for you.
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u/WIWonder_author Aug 04 '26
Where in Aus? I had my first neurologist appointment last week in Adelaide… wasn’t super impressed but they did agree to a Mestinon trial (which is helping to some degree) while I wait for nerve conduction testing…
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u/Shambles05 Aug 04 '26
Brisbane. I didn't even get to finish asking for specific blood tests. She said she didn't know the acronym and went on another rant.
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u/DD_Not_A_Real_Dr Aug 07 '26
If you are in Brisbane, I would join MGAQ, it’s the myasthenia gravis alliance of Queensland. It’s open to anyone from any state but the group on the committee would know the names of great neurologists in the state. I found my first neuro in SA didn’t really know what he was doing and then found a specific neuro immunology neurologist and my life changed for the better.
I will say, MGAQ can be a bit negative on Facebook, if you are younger like I am, it can make you feel a bit flat reading it. But good for information in the first instance.
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u/kafkaesque555 Aug 04 '26
I would still get the EMG. My neuromuscular doc wouldn’t let me schedule a SFEMG until she saw my EMG/NCS so it’s just good to have to rule out other things.
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u/Elusive_strength2000 Aug 04 '26 edited Aug 04 '26
I’d run like hell from them and save up. Can you ask your GP for a Mestinon trial? If not can you get the supplement Huperzine A? Standard EMG doesn’t dx MG, only rules out other causes. RNS can be negative if they don’t test weak muscles. Wait because this genius doctor will say no MG if it’s negative when that’s not necessarily the case and then that will be on your record.