Did you learn anything new on Rare Disease Day?

[Stephanie]

I want to thank everyone for being so wonderful, supportive & informative! Today, I had a SFEMG that showed no neuromuscular junction disorder & with no antibodies, it’s safe to say that I don’t have MG after all. With that being said, I’ll be removing myself but will continue to do what I can to help spread awareness! I wish you all the best!!

[Marcie]

Stephanie, Please be aware many have false negative SFEMGs and negative antibodies. who actually have MG. Visit FB group for Seronegative MG to learn about this. I had negative nerve conduction tests/electromylogram tests and negative antibodies and was erroneously told I did not have MG. I got encouragement from that group and found a neurologist 5 hrs away who properly diagnosed me with MG based on reversible eyelid drooping(ptosis) which can be as little as 1mm and response to Mestinon (pyridostigmine) with symptom relief within 20 minutes of first dose . This was after 2 neurologists told me I did NOT have MG. Getting the correct diagnosis changed my life!!! Please consider getting a correct diagnosis as MG does not go away just because someone says you have negative tests and do not have it

[Amy Cessina]

Hi Stephanie

Personally  I think you should listen to your doctor. Single fibers are done by highly trained doctors.  I wish you all the best. Consider yourself lucky you don’t have MG. Why would someone try to get a diagnosis of this terrible disease when it’s been confirmed you don’t have it.