Sudden onset movement disorder

I'm looking for ANY help or even suggestions here.  I should add that I have a neurologist appointment scheduled but it's 3 months out.  The anxiety of what is possibly going on is eating at me though.

Here is my story:

About 5 weeks ago I went on vacation, and noticed that the whole car ride, while sitting in the passenger seat, my thumbs were folded into my palms and I kept rubbing my hands.  The closest thing I could describe it as is extreme stimulatory behavior with sudden onset-made significantly worse by stimulants.  All weekend I battled this, and on the final day of vacation, it got worse.  I was walking on the board walk and all the sudden there was a disconnect between my brain and body.  Like I could physically walk but almost had to say to myself, "hey brain, do that thing you've done a million times."  My legs felt very heavy.  I also developed an incredible urge to kick my foot 'just right' on the ground or rub my foot on the ground in a motion like you'd put out a cigarette or throw a correct punch- again, all in some strange desire to meet a stimulus.  I didn't say anything to my family, made it home, and immediately was having trouble again with my legs getting out of the car.  It was like I was stuck in quick sand, yet could move (if that makes any sense?).  My hamstrings became VERY tight, especially where they tie into the buttock.  I started to have worsening problems with my hands, and was losing my thumbs all together now at certain times.  The muscles at the top of my forearms contracted and stayed that way, giving me use sometimes of my hands and other times it was like the blood flow was cut off between the upper and lower arm and closing my hands was a constant I had to do, just to make sure it was still possible.  (The closest I could find would be focal dystonia).  I opted out of the hospital and called my primary asap the next day.  They could find nothing on basic blood tests & lyme tests and referred me to the neuro.  It's now 5 weeks later, and my forearms randomly let up around week 3, the tightness in my legs is completely gone, and I'm athletic again.  What I'm left with is fingers that constantly like to move and toes that love to wiggle (closest I could find is athetosis).  I've had anxiety and tics my whole life, and my tics have definitely flared too.  I've even had movements in my jaw.  But this is what stumps me, that these movements are not involuntary to me like they seem to be with classic "Extrapyramidal symptoms" (btw I have tried numerous ssris/snris/benzos).  My body isn't contracting every which way, but it's like urges I need to meet.  I've never seen Tourettes tics that resemble what my urges are like.  It's like someone cut the cord between my mind and body and I became a slave to stimulating it.  Like something has hi jacked my nervous system.  If my hands look like they're playing the piano, I could consciously go "stop" and stop.  Same with toes, and face.  But its like the movements run away from me or that the answer to the huge itch I need to scratch is buried in the movement.  Does anyone have any idea what this could possibly be?  Take tardive dyskinesia for example:  The facial movements I make could closely resemble it, but from what I understand that is mostly from contractions and completely involuntary.  Mine is like, "ahh let me stretch the front of my jaw or fingers THIS certain way til it hits THIS certain point and hits it jusssst right," all the while I could stop it if I 100% desired, but somehow my body has convinced me I should keep doing it and not to stop.  I'm so lost.

0 likes, 12 replies