I'm so sorry for what you are going through. I don't have an answer, except that I hope you are being seen by a neurologist.
Thank you so much!! Yes, i was seeing one and he referred me to to a Neurologist, movement disorder. She is trying !!
After I read your post, I googled "toes moving involuntarily" and there are a lot of random internet postings on it. I was kind of surprised at the number. You're definitely not the only one. Please let us know what you find out. I'm interested and will support you any way possible. Perhaps someone will post here who actually knows something, lol.
I know whenever my dr well i seen two different dr's at first,,,and both said 'i've heard of this but never seen it',, They talked like it was very rare.But like you said , i've seen alot of people on here talking about it. Its very annoying anf bothersome,,,i don't think these drs are taking me serious. All my test comes back good,,I can just be standing talking to someone and just stumble like a drunk.And when the dr tells me to walk down this short little hall i walk fine.This one dr on one of these sites made more sence to me than my dr,He said could be a mild tremor predomionant Parkinson,There are lots of different kins of or forms of Parkinson.Anyway thanks and i will add you as a friend and let you know whatever i find out!!!
Okay, that will be great. I know it's annoying and bothersome, but I hope it's nothing serious. Are they going to do some tests? And have any of the doctors actually seen it happen?
It can still be rare, even if there are a lot of individual reports on the internet about it, because look how many people have access to the internet -- probably in the billions. So if ten people who have it post on the internet, that's still only ten out of a few billion.
I have had many test done.EMG,MRI'S of neck ,brain and back Spinal Tap, and blood work everything seems to be fine ,,just little something here or there ,,nothing to serious.LOL,,wear and tear i quess.I just wished they would say this is whats wrong!! Why this is happening.But don't so many other people !!!! Im in so much better shape than others.Thank God!! Yes, they all have seen my toes move ,,all i have todo is hold my leg out and they go amoving!! First they said it was Painfull leg moving toes, then restless leg, But i told the Dr. with all respect i do not think its that!! I have never lost a night sleep over this. They quit when i sleep. Something good!!! Enough about me,,, how are you ?Are you ok? I have enjoyed ,talking with you!! Thanks again