Quote:
Originally Posted by bny806
i have fasiculations,
But then I also have the double vision at night when tired, eyelid thing and just diffuse muscle weakness that started all at once.. they thought maybe cidp.. but 2nd emg discounted that and i have normal reflexes.. I then came across the triple furrowed tongue thing... which is my tongue exactly!! I can't find any other disorder besides MG musk that explains a triple furrowed tongue, I have had the fasiculations for over three years.. so that might not be related at all.. ugh.. I'm beyond nervous, but I can't tell yall how much I appreciate yalls time and replies.. I will be makimg sure they also consider an atypical MG presentation along with everything else too.. ya never know!!
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Have you ever been tested for VGKC antibodies (antibodies to voltage-gated potassium channels)? Those are associated with Isaac's syndrome, a disorder involving fasciculations. Patients with VGKC antibodies may have associated myasthenia gravis with or without AChR antibodies. This is not the same thing as VGCC antibodies (voltage-gated calcium channel antibodies) which are associated with LEMS.
http://www.pnseuronet.org/vgkc.php
This link describes the association of VGKC antibodies, Isaac's, and MG. It makes it look like they have to test your brain tissue, but don't worry, Athena diagnostics has a blood test for VGKC ab.
Tatia