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Undiagnosed Movement Disorder

Along with my disappointment from having a movement disorder that hasn't been diagnosed for over 4 years I'm going broke from all the appointments I've had.
My left leg (below the knee), foot, and toes all have very strange involuntary movements.
Sometimes the muscles pull my foot outward/inward, it shimmy's and pulls from my outer calf down behind my ankle.
Sometimes my toes pull in different directions and sometimes they pull together.
The movements are completely random, there is no rhyme or reason to them.  They can happen while walking, sleeping (wakes me up), or resting.
All of the movements are very painful and can last anywhere from 5 minutes to multiple hours at a time.
I have had and MRI of my leg, X-ray of my leg, 2 brain MRI's, an EEG, a nerve conduction study (which triggered movements), and about a million blood tests.  Everything is normal.
Currently I am taking tegretol which helps, but has not stopped the movements.  Prior to getting on tegretol I was having movements about 90% of the day, now I have them approximately 3-9 times per week.
My neurologist is baffled.  He sent me to the University of WA's movement disorder clinic where I was basically told it was not Paroxysmal Dyskinesia (like we thought) because it wakes me at night and is painful.
We have ruled out Dystonia, Kinesgenic Paroxysmal Dyskinesia, MS, and who knows what else.  
Now my Neuro would like me to go to another clinic in Kirkland as well as have a sleep study done.
Does anyone have a clue what this could be or have any suggestions for me as to what route to take?
I don't want to be on tegratol forever - I have a family history of osteoporosis and it doesn't take away all of the movements - every day the movements are coming back more and more.
Help, ideas, thoughts, please and thank you?
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Avatar universal
Well, I think you have simple partial seizures, which originates in one place in the brain (rather than all over the brain the way you think of full-blown epileptic seizures).  Most people would rather not have brain surgery to remove the offending area of origin.  The medicine you're taking is the standard, altho there are others, including Lamictal.  If you will think of yourself as epileptic, those people all have to take medicines forever, and they adjust.  So, too, will you.  If the side effects of your drug are worrisome, you could try some of the other antiepileptics that are available.  I'm sorry you have spent SO much time fooling with this thing, but sometimes that's what it takes to realize you got what you got, so that you can finally accept it, take the drug for it, and move forward.  Look up "simple partial seizures" and do some reading about it, and perhaps that will help you understand the situation better.
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Avatar universal
are u a ******* doctor? what do u no about anything to do with the brain? do u have a disorder that u been dealing with for years that is undiagnosed? do u have a clue how frustrating it is to have a disorder that your neurologist is baffled about? It ruins your life! maybe u could help me with my disorder. I can sleep 20hrs a day everyday and no one can tell me why. I've had every test u cld image done. I take stimulants to stay awake during the day and sleeping pills at night to sleep. and no one can tell me ****!!!!!!!!! got any advise
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Avatar universal
I would add to my previous comments that you need to see a psychiatrist for anger issues.  I know, having a horrible physical ailment can drive you nuts, but come on, YOU came here and asked US, and we're just giving you our opinions.  And obviously I know something about your issues or I wouldn't be here.  Try breaking your back in three places in a car accident.  But hey, take what you want and leave the rest, we don't know everything.  GG
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1086746 tn?1288624389
Hello Greg
I found you answers very helpful to me!
I am very sorry for the people in the previous  posts.
I do understand the frustration of not having all the answers. or any answers at all.
I understand having our lives changed over night.

But just the same, we do come here and ask questions and I would be so lost with out all of you!

I learned something very interesting from your answer!
My toe big toes move up and down all the time.
I can stop them with effort, but it isn't easy of comfortable.
As soon as I quit thinking about it, they move again.
I forget about it until someone mentions it to me.
I find myself trying to hold them still when some one's around or
I have saddles on and I sit down and see them..
if you have anymore info please share it with me
Thanks GGeg!  
Hugs NiCee
Helpful - 0
Avatar universal
Dear CamsMom and NiCee,
I did not realize that the person who posted in a fit of anger was not the original poster.  I guess we're all blind at one time or other, so ignore my second post, CamsMom.  And NiCee, I thank you for being kind.  Actually, it was I who should not have taken all this stuff so personally!  I hope you both get well soon, and I'll keep on keeping on.  NiCee, perhaps you have a spasm in your big toes, might be a particular pair of shoes that started it twitching, which would explain how it may not be a seizure but rather a spasm, which is why you can control its movement, so get some foot rubs and see if you get any improvement from a few of those, and soak them in very warm water, too, to help relax the muscles.
GG
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1168938 tn?1327154232
Hi
I also have a movement disorder, it is spinal myoclonus it causes me to jerk from my back and through both legs. Although I have a name for it, it doesn't help much because it can be a symptom of something else and after 4 years of tests, we still don't know what the something else is.
I know where you are coming from because it is so frustrating, exhausting and painful. I take clonazepam which is very helpful, I take it at bedtime (I jerk in my sleep too) and it does help to knock me out and calms the jerking down.
I don't take anything during the day as I don't want to be a ZOMBIE ;o)
I rather jerk.
Take care
Suz
Helpful - 0
Avatar universal
Yes I have not had a test Yet that has any leads to wth is going on, but a fear that the next time I run out of clonopin I will die.. Its progressive and I have had it all my life..

The best neurologist I have had said Jeffrey I dont know, but you was born with it.. The worst part of the Movement disorders is they dont get treated..

They teach 1 thing and do another.. NAMI says I need a Neurologist and phyciatryst that have a fuc kin g clue what a movement disorderr is.. Mine started with visual and audio, like a phycosis.. Soon I wont have a doctor to prescribe the life saving drug anymore, because its not for phyc.

I am veryyyyyy  sensitive to Antiphycotics. It takes a week before I can walk or talk.. coming off Resperidal.....

Soz but alot of the doctors are dumbas s es. I will try 1 more neurologyst, and 1 more test on the Brain stem, then I will be headed for Stq. Louis Missoui   there is #1 or #2 in the nation, Boston Med is best too..

Longest I made it without clonopin is 4 days, then 911, think only treaters sayd anything about my meds.

Mom prayed to ask for me some help or take me out... I am still here :-)

Chricrpracter helps alot with my Gate, and muscles. Mine has gonee from A mental illness with alot like symtoms of bipolar  to life threatening. Only thing not happen yet, havnt gona down a flight of stairs but done everything else

Camsmom there is HOPE
Helpful - 0
Avatar universal
I'm a toxicologist and I have had an undiagnosed movement disorder for 6 years. It manifests as hand tremors, shoulder jerking, and head nodding. It is episodic with episodes lasting anywhere from 20 minutes to 8 hours, sometimes with brief periods of respite before it continues. It occurs when I'm very stressed and leaves me utterly exhausted. I've been to several neurologists and specialists with no success at determining a diagnosis. It's expensive and tiring to say the least. I was told by one specialist that because my blood work was normal, she thought I needed to be psychoanalyzed before she could offer further treatment. I didn't go back to her.

With my science background, I have been doing a lot of research and may have figured out something that might work for me and could benefit you as well. The last two episodes I've had were stopped abruptly when I took GABA supplements. GABA is a natural neurotransmitter produced by interneurons in the brain that inhibits movements by opening chloride channels into motor neurons, diffusing the action potential with negative charge. I spoke with one of my professors last week about this and he added an extra layer of possible causation: there may be an underlying condition of mitochondrial dysfunction. The mitochondria are the powerhouse of the cell and produce energy. However, if they aren't functioning properly, they might leak calcium into the system when under stress. Calcium has a positive charge and may account for the extra motor function. If this is the case, a movement disorder could be treated by taking supplements to support the mitochondria such as CoQ10 -- an antioxidant produced in healthy cells -- with GABA supplementation as needed during episodes.

I hope this helps.
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