Hello everyone,

I am a 28 year old woman in Texas still awaiting an official MG diagnosis despite some pretty debilitating symptoms. For the past five months I have been experiencing fatigue and generalized muscle weakness, primarily in my arms and legs with occasional swallowing issues. My PCP thought it sounded like myasthenia gravis or LEMS, and sent me to a neurologist. The neuro said that I clearly had fatigable muscles in my arms and legs during muscle strength tests which pointed to MG. He sent me off to get my antibodies checked, but both AchR and MuSK came back negative.

During the past week my breathing started to feel a little weird and heavy, like it was taking more work for my muscles to operate my lungs. I didn't think much of it (dumb mistake #1) and ignored it as it got progressively worse over the week. On Saturday I woke up feeling great! I cleaned up the house and took the dogs to the park and even ran around with them (dumb mistake #2). By Saturday evening I was in rough shape and couldn't get out more than a couple of words at a time because my breathing had gotten so weak.

I had my husband take me to the ER and I was admitted that night. Luckily I was breathing well enough by then that I didn't need ventilation or bipap. The hospital neurologist agreed that this seemed like a pretty classic case of generalized MG. After a chest CT, brain MRI, and a few rounds of steroids, I was released late Monday. Today was my first full day back at home and breathing is still a bit of a challenge. I'm not sure how much the steroids really helped.

The neurologist I saw at the hospital encouraged me to see my normal neuro ASAP to get started on MG treatment, regardless of the fact that I haven't been officially diagnosed. I know everyone's case is so different, but have people with generalized MG (no/minimal eye involvement) and/or double-seronegative folks had success with Mestinon? Or was another treatment more effective for you? I'd like to go into my next appointment as knowledgeable as possible about treatment options.

I'm also scheduled for an EMG tomorrow-we'll see how that goes! All I really want at this point is an answer. I will update as soon as I know anything new. Thank you for reading and I would appreciate any thoughts or advice anyone may have.