Sudden onset movement disorder

Posted , 5 users are following.

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.

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12 Replies

  • Posted

    Hi please do not take this the wrong one and i would not do anything to offend you or hurt your feelings, but by any chance have you been googling any of these symptoms , because you are using a lot of big words and a a lot of doctors words to think what you have, and to be honest it sounds like it is nero, and comes in the category under mental illness, that does not mean your mental in the head or thick, it means a lot of things, you are over thinking things and your brain is going into overdrive, so it could be anxiety , panic attacks , the mind is a very powerful tool and if it wants to think the worse of things it can and it can even make the body do things or not do things it does not want to do,sorry i hope this makes sense, i am not a doctor or professional but i talk from experience , i have many illnesses one includes, anxiety, and panic attacks, and they are not nice and they are real , and you can get help , you have taken the first step talking about it , second step seeing a doctor about and being open, and you wont like this one i did not but it is important telling your family, the more people know the quicker you can get help, and hopefully the results you need to get better, and you have us on this forum to help you, and if you want to talk privately ,you can do that to, good luck and god bless x
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    • Posted

      hello! and thank you so much for your response!  I have been very open about my anxiety with family/friends and constantly seek help for it, so I'm somewhat on the right track.  I have wondered though if in some way it's a stimulatory type thing to lessen stress, or if it really is something out of my control.  Regardless, I can't wait to get some answers, as I will be damaging my fingers from the excess movement if I don't get this under control.  Once again, thank you

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    • Posted

      Your very welcome just hate to see anyone suffering, sometime small things on google are ok but serious problems should be dealt with by the professionals, not saying they are always right but most have a good idea , take care and i hope you get better soon x
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  • Posted

    Following on from Jay babes, I want to tell you how anxiety caused some of my neuro symptoms. Firstly I was just getting constant eye twitching, and finger twitching, this was the base symptoms. I also have lupus and hyperthyroidism so I didn't think much of it for the first many months. But then it carried on and I googled it and the symptoms got worse. The twitches spread all over my face, my tongue, the more I read about degenerative neuromuscular disorders, the worse my twitches became. Once I realised the link, I stopped googling, most of the newer symptoms went away, and I could focus on the original ones. My hand started having some pretty bad tremors after any form of exertion, and I've since had a brain mri, and seen a movement specialist. But the lesson has not been forgotten, Google plus anxiety is not good. Anxiety can make your body do things. It's very real. So if you can, stop Googling, do some headspace and see if some of the symptoms go away, so you can focus on which ones are the problem before you see your neurologist. It could well be that it's nothing to do with anxiety, but almost all neurological disorders are made worse by stress anyway. Update when you've seen the doctor. I known it can be really scary

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    • Posted

      thank you for your response!  I have wondered if it was somewhat Psychogenic in a way that is outside of my conscious control, like it's somehow a way to channel negative emotional energy into senseless movements to lessen stress.  I really can't know for sure yet.  But you're so right.  Google is the enemy and stress makes this flare up big time.  I will update when I see doc.  Appreciate the concern!

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  • Posted

    Wow did you say you had ticks ? Just so much to input but friend of mine had Tourette’s my nieces son has it they just found out last year just out the blue he’s think 10 now . Sound like a nerology disorder or some thing to do with your brain very odd . I had gbs Amun deficiency (Gillian Barrie syndrome think now after all the suffering I have cidp when u have neurological disease they have to pin point go through lots testing and took them 10 days of me deteriating so i hear you on the issue you have think you should have some one stay with you till you find out make sure people around you family know just saying could just disappear or could get worse . I have axiety depression due to what happen to me being paralyzed suffering there’s every reason to feel wtf is going on . How old are you if you don’t mind me asking .?
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    • Posted

      I’ve had them diagnosed by my pediatrician when I was was younger.  They got better as I was older then wham! Here I am.  And I know, this whole process is very frightening.  I wish you the best.
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    • Posted

      Hi Caroline sorry this has nothing to do with this but i hope all is going well , i am just trying to your attention caroline because we keep missing each other,  just to let you know i have NOW left a pm for you, and we can carry on from there, hope you read it , have a good day jaybabes xxx
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    • Posted

      Sorry hun know issue going read it now was in hospital all night slept till 1 pm they got me on antibiotics again steroid due to this phnamonia again not going away . Then of coarse being so busy doctors so on but I’m going to read it now ok hun then I can send you one from there also .
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  • Posted

    So young both so very smart and hope goes well keep us posted hugs
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  • Posted

    Check for lyme
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