Hi again, Annie. Thank you for your kind offer. If you type "PocketOodles episodic weakness" in the search bar of youtube, you will find a video of my symptoms.

Episodic weakness: After childbirth (age 27, now 41) onset of episodic lethargy. Age 31 eyelids droop completely closed. Progressed to generalized weakness, but affects eyelids, cheeks/upper lip, and hip flexors the most; often 100% limp unable to move. Slightly positive self-administered icepack test. Diaphragm sometimes mildly affected, but no double vision or chewing/swallowing difficulties. Episodes occur almost daily and can last anywhere from 30 min. to all day.

Main trigger: meals, especially carbs on empty stomach. Also becoming hungry, and strenuous use of hips or shoulders. Stimulants and adrenaline help. Short-lived reprieve in early 30's after a 5-day prednisone burst and using prescription allergy and asthma meds and inhaled steroid for a respiratory infection. Can play 30-60 min. vigorous racquetball when not in an episode, but 5 min. on gym exercise bike will induce weakness.

Episodic spasms: resembling dystonia. Onset in eyelids, age 31(?) and gradually spread. Times of debilitating eyelid pain and squinting since 6th grade, not sure if spasms or pain from fighting weakness. Spasms are a real nuisance, but it's the weakness I'm desperate to get help for.

Electrolytes (taken during both kinds of episodes,) antibodies, EMG's, MRI's, sleep study w/MSLT, thyroid, cardiac testing, etc. all normal. Glucose tolerance test nearly paralyzed me but result was normal.

10+ neurologists including Mayo Clinic and MDA clinic at Barrows Neurological all say "Gee I don't know." MG and periodic paralysis have been suggested, but both were prematurely dismissed. Movement disorder specialists say dystonia doesn't have this kind of weakness. Neuromuscular specialists see normal test results and abnormal spasms and say "not in my field, go away." Currently trying to get into Undiagnosed Diseases program at NIH.

Sorry for the length
Geode