NomydeyplumeyMere
Member
I am looking to put a name on what I am experiencing. I posted before but am looking for closure.I started with these random episodes of lower lip spasms. Both sides of my lower lip would contract together almost like an invisible hand was pinching them together. This continues at a quick pace. Had isolated incidents starting in May and didn't think much of it until July when it was happening almost daily and seemed to be lasting longer. It seemed to be triggered 90% of the time by eating. August I went to primary care who said no ALS and no Parkinsons. Thought it was a variance of 'burning mouth syndrome' and put me on Klonopine 1mg at bed. (my story is complicated by the fact that in 2010 I did two 4week series of CARAC a chemo cream that was to eat away a precancer on my lip but ended up destroying my whole lower lip, followed by a few years of flare ups that dr diagnosed as herpes). Klonopine seemed to help a little. I was still freaked out by this so went to a neuro. My neurological exam was normal. A few weeks later he had me come in for an EMG which was normal. He tested my one leg, one arm and face. STuck needle through bottom of my face into my tongue and also stuck it into my lip through the under side. I was not having any twitching at the time. He said it was normal.I still have lower lip spasms and can even bring them on myself. I have a book of facial exercises which I thought may help and when I do the ones to strengthen the mouth muscles my lower lip goes into its spasm. I can usually stop it by pursing my lips together really, really tightly for about a minute. Sometimes have to repeat about three times before it stops. I also have a bunch of random isolated twitches all over my body when at rest. I'm not sure if I'm just becoming more aware of this type of thing or not. My mouth also quivers when I smile.Question, does this sound like bfs? Should I stop the klonopine? Is exercising my mouth/lips a good thing or bad? I thought maybe strengthening the muscles may stop the twitching, but don't know.The neuro basically said my muscles and nerves are fine. EMG fine, neuro exam fine. Brain mri fine (though had an incidental white spot on frontal lobe which he wasn't concerned about). He basically said call me if anything gets worse or changes. No need for followup.I should be happy that the neuro was positive it was not motor neuron and no brain tumor. He basically said not neurological. I am still anxious since he just said he didn't know what was causing it and he thought it would eventually go away. I have a big, once in a life time family trip coming up in three weeks and I am still consumed by this and can't enjoy anything.