[MikeS]

Hi, Jodi. I had my first MG episode last year (a couple of weeks before Covid appeared here in California), manifested by just diplopia. At the time a neurologist couldn’t pin down the MG diagnosis due to only the single symptom and no confirming test results. This year, before my 2nd and more extreme event (tongue, swallowing, drooping eyelid, facial muscle weakness, slurred speech, etc.) the neurologist had me do more tests and finally got enough evidence to label me with MG. So we weren’t surprised when the second event started. I’m fortunate to not have any other debilitating health issues. My other main problems are reflux, nasal allergies, life-long anxiety disorder, arthritis and bulging spinal disks. Let me just say, not knowing when the next MG event will occur and how serious it will be is not helpful when you have to deal with anxiety in general. Has anyone else seen their diagnosed anxiety disorder worsen with MG, and, if so, have you found any way to mitigate it? Thanks. Mike

[MikeS]

Hi, Michelle. I had my first instance of droopy left eyelid a few months ago. Initially I would hold my eyelid up, while driving, with my left fingers. That got old and useless quickly, even on short drives. I got out the scotch tape and tried taping my eyelid to my forehead. That seemed to work much better. I would place the lower end of the tape just below my left eyebrow, pulling up as needed before attaching the top end to my forehead. I used this technique until the drooping decreased to the point that I didn’t need it (around 3-4 weeks later). Besides driving, I also would tape up my eye for TV viewing. The scotch tape is hard to see, so it doesn’t look so bad in public. If I went shopping I would wear a baseball-style hat to cover my forehead and pull it down slightly to reduce visibility of my raised left eyebrow. I was diagnosed only recently and came up with this on my own, so if there are other better solutions for drooping eyelids, I’d sure like to hear other peoples’ ideas. Thanks! Mike

[MikeS]

I was “fortunate” to be hit with late-onset MG.  1st event was only diplopia.  2nd and most recent included diplopia, drooping eyelid, difficulty swallowing and chewing, slurred speech and facial muscles weakness.  I didn’t receive the diagnosis until the 2nd event.  I now have Mestinon on standby for the next event.  At this point I don’t have any clues about my potential triggers or how long they might take to manifest the MG.  Any hints or suggestions for this newbie on what potential triggers to look for or avoid?  Any advice or suggestions are much appreciated.

Mike

[MikeS]

In January 2020 I developed diplopia.  The ER ruled out everything they could think of.  They referred me to a Neurologist.  The Neurologist had me try every test she could think of that might prove MG, but everything was negative.  The diplopia disappeared after 2 months and the MD decided to r/o MG.  This summer I developed diplopia (again), slurred speech, difficulty swallowing, drooping eyelid, and weak facial muscles.  This time the (same) Neurologist confirmed MG (yay?).  I’m 68, so it’s late-onset.  So, yeah, apparently even good MDs find it sometimes difficult to diagnose.