muscle wasting/help needed

[Jane L. Thompson]

18 year old with marginal developmental delays as an infant.
Now experiencing declining strength.  She cannot walk anymore.
She has deltoid and thenar wasting.  Distal strength is
stronger than proximal.  Arms are more involved than legs.  She
had subtle symptoms x1 year, then progressive weakness since
May.  She has a fine rash on trunk and distal extremities.
ALS, MS, Guillian Barre have been ruled out.  Gammaglobulin x3
does not seem to help.  Any input that could help with
diagnosis and treatment would be greatly appreciated.  Please
email me at jlt3s at virginia.edu  Thank you
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jlt3s at virginia.edu