Hello!
I am newly diagnosed with MG ( ACHr positive, MUSK negative). My story started about 1 year ago when I started having double vision and eye lid drooping. These symptoms waxed and waned for a few months before I went to the doctor. After seeing 2 opthamologists, my pcp, and finally a neuro I was diagnosed in Feb. Unfortunately, at this same time I realized I was pregnant. My regular neuro says my symptoms are mild and she did not want to start me on medication and referred me on to a neuromuscular specialist. My appointment with him is not until April.
I have been extremely frustrated over that past few weeks because my OB is pretty much not familiar with MG, I saw a MFM specialist who pretty much gave me no information and told me what I already know ( That MG can be unpredictable in pregnancy, can cause transient neonatal MG, etc). They told me to just follow up with my neuro. The regular neuro seemed not knowledgeable about MG and pregnancy and that is why she referred my to the specialist. I feel like nobody is giving me any answers and they keep brushing off my concerns. My last bit of hope is that this neuromuscular doc knows what he is doing. I live in Pittsburgh with some nationally recognized hospitals and I cannot believe the run around I am getting.
I am looking for any advice and support. And also if anyone has been pregnant with MG I would love to hear from you! Finally, anyone in the Pittsburgh area???
Thanks in advance