u/Jumponamonkey

Is getting a diagnosis always such a headache? I have a lot of the classic MG symptoms; leg weakness, Double Vision, Occasional Facial/Neck Muscle weakness. I had a positive AcHR Antibody blood test.

Saw the neurologist today who is saying he doesn't think it's MG based on the fact my 5 minute neuro exam today was normal (aside from the high HR when using my muscles, but that's apparently not his area), dismissed the positive blood test because apparently it's not high enough (0.57nmol/litre) and pointed out I'd also had a negative AcHR Antibody blood test (0.01nmol/litre).

He's ordered some sort of electric muscle fibre test, and some more bloods. Repeated the AcHR Antibody, ordered MuSK tests, and said they don't do LPR4. But the muscle test will be a couple of months. Refused to prescribe Mestinonin on a trial basis because he said he'd need to see clear evidence of MG.

My symptoms aren't consistent, they vary day to day, but I can reliably worsen them with activity. I feel like I'm going to just get dismissed, and left to struggle to walk for the rest of my life. It may not be MG but the suggestion is definitely that if my bloods and muscle fibre test come back negative I'm just going to get discharged from neurology with no answers.

Just had the results of my private blood test back. Positive for AcHR antibodies. I kind of suspected this was a possibility but I don't even know what to expect now. It took me nearly two years to get settled on meds for my Crohn's disease. I don't know how combining different types of immunosupressants for different types of autoimmune diseases works.

I probably won't get to speak to Neurology for another few months yet either so I don't even know what they'll say.