I was a very active teenager, I was training to be a professional dancer (4+ hours of training every day) and I still have a lot of strength from that despite being ill for 7 years. But I can't sustain or repeat muscle contractions for very long.

When my neuro has done physical muscle fatiguability tests I don't feel like he tests it for long enough to see the effect take place, and he wouldn't do longer even though I asked. I'm unsure if maybe I'm wrong, and 5-8 seconds of resistance pressure is enough to show the fatiguability in genuine cases of MG.

I never suspected MG (I didn't even know it existed!) until about 2 months ago I started feeling like my muscles didn't have the physical energy to expand my lungs to breathe once I get tired, and my throat feels like it's collapsing and I strain to keep the airway open. and now in the last month I have a drooping eyelid/eyebrow (on opposite eyes) & my voice gets squeaky and nasally if I talk too long, and swallowing is laborious & doesn't always work the first time.

I tested negative for AChR and MuSK though, so combined with the physical fatiguability exams my neuro is saying are clear, he has ruled out MG. I'd be fine to accept his judgement, but I'm not sure if he's properly exploring this option, given how my symptoms seem to align with MG. any opinions would be welcome! thanks in advance

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Oh, man, I am always frustrated with those fatigability exams! My neuro never tests long enough either. I explain every time that my initial strength is normal.

It is pretty common to test negative for the antibodies. Sometimes they come out later. Sometimes people have another antibody besides AChR and MuSK.

People with symptoms like yours who test negative for antibodies should have a single-fiber EMG. That's how I was diagnosed.

A lot of people here have found it helpful to see a neuro-ophthalmologist.

Abby

Thanks for the reply Abby!

I managed to push my neurologist into doing single fibre EMG. I really wanted him to do the LEMS antibodies as well, given that I started with generalised weakness/fatigue and only years later have the more specific symptoms started, but he said no. Not sure why he wanted to jump into the more invasive test first. The SFEMG is gonna be months away though, and in the meantime I'm bedbound trying to avoid exacerbating my symptoms!

I see a dietitian for unrelated reasons and she is advising I see a speech pathologist (who specialises in dysphagia) because of how bad the swallowing difficulties are becoming, so that's on my radar too.

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an update for anyone coming upon this later - I have a tentative diagnosis of MG after 60mg of mestinon took me from unable to swallow my own saliva and struggling to breath to walking the length of the house and sitting upright unsupported and eating soup! I have been sick and declining for ~7 years so this probable answer is such a relief. I know which direction to go now

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