Dear Alice, or others with insight,

Recap: I have been having episodic, often complete, ptosis of unknown origin for over 11 years. Doctors don't even seem to be able to agree whether my problem lies in the muscles, neuromuscular junction, or in the brain, or elsewhere. I recently had a doctor urging me to get a lumbar puncture, even though my brain and C-spine MRI's are squeaky clean.

Based on years of reading articles by doctors about blepharospasm and Botox injections, my understanding is that the levator palpebrae is responsible for opening the eyelid. It is weakness of this muscle that causes ptosis. They can inject Botox to weaken the orbicularis oculi without ever causing ptosis, unless it leaks over to the levator. In cosmetic Botox, they weaken the frontalis without causing ptosis. Ptosis repair often involves levator tightening.

There is only one nucleus in the brain for the levator muscles on both sides. (Hence Hering's law as applied to ptosis repair)

Therefore, if one experienenced ptosis from a purely neurological defect, wouldn't it have to be bilateral? I often experience my right eyelid drooping all the way closed a full 5 or 10 minutes before the left eyelid droops closed. Wouldn't this indicate that my ptosis doesn't stem from a problem in the brain, but would have to involve peripheral nerves or muscles?

Can you enhance my limited, layperson understanding of this issue in any way?

Thanks,
Tatia