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Yes, being seronegative was a challenge with diagnosis. It took close to 8 years from first mention of MG to an actual presumptive diagnosis and some treatment. Along the way I had the normal antibody tests done including MUSK and some other more obscure ones. Single fiber EMG was read to be negative, though clinically I presented as MG.
Double vision was my first symptom and it still continues to be the biggest issue. I also have had swallowing issues, slurring of speech, and muscle weakness (mostly arms). I was diagnosed on clinical symptoms and a positive Tensilon test. I’ve been on a variety of treatments and am currently taking pyridostigmine, prednisone, cyclosporine and IVIG infusions. The regimen keeps most symptoms at bay.
Amy, are you currently getting treatment? I totally understand that it is difficult to find a neurologist that will manage treatment of a seronegative patient.