Discussions By Condition: I cannot get a diagnosis.

Uncontrollable twitching and jerking

Posted In: I cannot get a diagnosis. 20 Replies
  • Posted By: Anonymous
  • September 28, 2006
  • 02:05 AM

The story below has been submitted anonymously through our
'Share your story' feature:

I have had twitching and jerking for nearly 6 months now. Not the under the skin kind of twitches, but almost like living in a fun-house where each limb, finger and body part moves whenever it feels like.

My hands constantly shake as does my body in sort of a weak and trembling sort of way. I can't sleep with all the twitching going on, so I have to take an ambien every night. I quit drinking coffee, chocolate, sugar, alcohol, work out 4 days a week, yoga twice a week and because of this mess see a therapist once a week.

I have been to the neurologist, psychologist, acupuncturist, medical intuitionist and chiropractor. No one seems to know what to do with me.

The acupuncturist says I have internal wind, which points to a depleted liver. The medical intuitionist also said it sounds like my liver and kidney are depleted.

I have been told it is not Alzheimer’s or Parkinson's which is great, but what is it and how can I make it go away?

Does anyone know how to get this twitching, jerking and shaking stuff to go away?

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20 Replies:

  • My husband has spasm like twitching that makes him flop around the bed caused by inflammation. He is undiagnosed but once the inflammation is under control his body is able to control his motor movements, otherwise the only option is sleep where the brain stops your motor movements. We are on a long road of hospitals and docs. Keep us posted and we will do the same.
    Anonymous 42,789 Replies
    • October 8, 2006
    • 08:03 AM
    • 0
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  • I know that this is and older post, but I have the same issue. After waking up in the morning especially, or on occasion when I'm relatively tired, my arms twitch uncontrollably twitch. My parents are worried, so I have to make an appointment with a Neurologist. Anyone know what causes this, I'd like to have an idea of what the doctor is going to tell me before I get there. Thanks so much
    Anonymous 42,789 Replies Flag this Response
  • okay so i have had this uncontrollable twitch in my right arm for like every. my doctors diagnosed me with myoclonus and have given me chlomazempan and keppra so far to eliminate the twitch and they have not worked so i dont what will work...if you have found anything that has worked you should let me know.... you can email at lbarwick90@yahoo.com my name is lindsay... you should ask your doctor if you have myoclonus cause it defined as quick involuntary muscle jerks.
    lbarwick90 1 Replies Flag this Response
  • i do this to,it could be parkins,but mine is from imflamation and pain.im 21 and have prostate probs.and imflammation.pain and imflamation med help untill u find the problem,also keeping warm and sleeping/relaxing helps which is hard.also fever.still trying to find why i have prostate and rectal pain.i did have a fissure and inner hemm.surgery.hope this helps
    Anonymous 42,789 Replies Flag this Response
  • You might want to google tardive dyskinesia and check ANY drugs you are/have taken for this "side" effect, no matter when or for how long. With a possible liver problem, almost any ingestion of drugs can be problematic.Oh, and by check I mean thoroughly research it. Quite a few do not list this in the literature you would get with a drug, and the vast majority of doctors will not ever diagnosis it, because it is drug-related.Hope you find some relief soon, no matter what the cause.
    Anonymous 42,789 Replies Flag this Response
  • First I would like to explain, when I was around 14 years old I went through the same thing my daughter is going through right now. So I know it is passed through the genes.She is weak, unable to sleep, crys for no reason at times, ( during her cycle) has chest pain and her muscles ***k and twitching, mostly her stomach area but her shoulders as well. She's complained of musle numbness through out her arms.No one seems to have an answer. Her doctor give her xanx and put her on zoloft. The xanx seems to help a little but the jerking and twitching still is visible.This all started while we where on vacation with her. She said she didn't feel well, said her heart was racing and she felt faint. We took her to the hospital but they could not find anything wrong. The next day the twitching and jerking started. This has been going on since April. We have taken her to heart specialist because of the teckacardia shes had. We have had test after test and no one seems to have an answer for us. We are currently seeking counseling for her, the counselor says she has never seen someone with this problem in all the years she's been in this field. Still no answers. My daughter has always got up every morning at 5am, got dressed went to school. when she come home she did her homework, got on the computer, watched her tv shows then went to bed. She made good grades and couldn't wait until she got to school. She was in a club that meet every Thursday after school. This was her routine everyday until our vacation. Now she has missed everyday of school since March 13th through June 12th. She will have to take all her classes over again next school year......................................................................................We are currently looking into seeing if she may have whats called porphyia. acute porphyrias affect the nervous system. Symptoms of acute porphyria include pain in the chest, abdomen, limbs, or back; muscle numbness, tingling, paralysis, or cramping; vomiting; constipation; and personality changes or mental disorders are just some of the symptions.
    EMertens 3 Replies Flag this Response
  • Emertens -While this is late I thought I might still comment. I hope your daughter is doing better by now - but if not (and even if so for possible answers) I would recommend looking into dysautonomia. Dysautonomia is a medical term often utilized for a group of complex conditions that are caused by a dysfunction of the autonomic nervous system. Childhood dysautonomia conditions typically (but not always) strike adolescents, often after a period of very rapid growth. Tachycardia and neuromuscular involvement are hallamrks. It could explain some or all of your daughter's symptoms. The good news is most adolescents eventually "grow" out of it. http://www.dynakids.org/what.jspThe original poster and others should also look into Dysautonmia as well as other cerebellar degenerative syndromes - especially if progessive and autonomic and/or other "parkinsonian" type symptoms. BFS and other answers generally are exclusionary. This shouldn't be alarmist but continual twitching and jerking can be earmarks of progressive problems as well as benign.To all my best.
    Anonymous 42,789 Replies
    • October 2, 2008
    • 09:43 PM
    • 0
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  • Okay, this is known as ballismus and can arise for a variety of reasons and although it can rarely affect both sides of the body, typically it is limited to one side only and known more properly in such cases as hemiballismus. A common cause is a lesion at or near the subthalamic nucleus in the brain, but if you've undergone MRI with contrast, then it's unlikely to be the culprit here. Tardive Dyskinesia does not produce jerking or twitching movements, but rather a sort of writhing and twisting of the body, facial expressions and uncontrollable movements of the tongue. It is a consequence of certain psychotropic medication use and would not be a consideration here at this point. Depending upon your age and the onset, disorders such as tourette's syndrome can produce tics of a characteristic and unpredictable nature, although I doubt it's likely here. Lastly, there are psychiatric manifestations which can produce ballismus-like features with tremulousness as well. I'm not suggesting it's the cause in your case, but merely highlighting the various common causes for the symptoms you are describing. My suggestion would be to obtain a re-evaluation by a neurologist and make certain that conditions such as a lesion or Creutzfeldt-Jakob disease have been ruled out. The time-frame of 6 months should rule out certain disorders, but it's important to determine whether symptoms have grown worse, remained the same or even improved during this period. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • October 2, 2008
    • 11:16 PM
    • 0
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  • To all who posted on this thread. Try looking at the possibility of Lyme Disease and other tickborne illnesses. It can look like Parkensens and many other diseases. It can cause many physical and emotional and mental issues. See the film, "Under Our Skin" and see if you don't recognize some of those people's symptoms. This is a epidemic happening. In five years this will be commonly known like AIDS is now. But there is a lot of different reasons why this is being overlooked. Find a doctor who treats Lyme Disease and have them test you. A regular doctor and regular labs probably won't help you on this.
    Anonymous 42,789 Replies
    • October 3, 2008
    • 06:48 AM
    • 0
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  • I don't know if what i've got has anything to do with this, but when i wake up in the morning when i've only had a short amount of sleep, i get these uncontrollable twitches that can last up to 15-20 mins. I'm unable to control my body, i sometimes fall down the stairs because my legs are uncontrollable and when i try to pour myself some cereals, i usually end up throwing the packet on the other side of the room because my arm just jerked it out.It's really frustrating, i usually end up not having anything to eat because i can't even make myself a bowl of cereal without the cereals and the milk splattered across the kitchen floor.My eyes seem to roll back slightly aswell, i can't focus on anything, it feels like i'm still half sleeping but i know i'm not. I've had this since i was 14 and i am now 17, and i'd really like to know what causes it?Could it be the lack of sleep?
    Anonymous 42,789 Replies
    • October 4, 2008
    • 10:05 PM
    • 0
    Flag this Response
  • I don't know if what i've got has anything to do with this, but when i wake up in the morning when i've only had a short amount of sleep, i get these uncontrollable twitches that can last up to 15-20 mins. I'm unable to control my body, i sometimes fall down the stairs because my legs are uncontrollable and when i try to pour myself some cereals, i usually end up throwing the packet on the other side of the room because my arm just jerked it out.It's really frustrating, i usually end up not having anything to eat because i can't even make myself a bowl of cereal without the cereals and the milk splattered across the kitchen floor.My eyes seem to roll back slightly aswell, i can't focus on anything, it feels like i'm still half sleeping but i know i'm not. I've had this since i was 14 and i am now 17, and i'd really like to know what causes it?Could it be the lack of sleep?I know this topic has gone quiet for a while, but I saw this and had to reply. I have the exact same problems. I've fallen down the stairs as well because of my legs. It happens at the same time with me as well, and all I can figure out is that it's lack of sleep. But sometimes it happens when I've had eight hours of sleep or more.Does anyone know what this could be or what could help?
    Anonymous 42,789 Replies
    • January 2, 2009
    • 07:30 AM
    • 0
    Flag this Response
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  • I know what you mean, it still happens even when i've had a total of 11 hours of sleep. I asked the doctors about it and they had no idea what it could be, they made me do some blood tests and nothing was found.I don't really have an explanation for it, mum keeps telling me it's a lack of some sort of food? maybe calcium, or somethingBecause i haven't had the twitches in a while, and my diet has changed, i don't eat junk food anymore and i drink a lot of milk but then again, it could be totally irrelevant.
    Anonymous 42,789 Replies
    • January 3, 2009
    • 06:32 PM
    • 0
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  • hi am new to this site and just a word of warning to all not to get your hopes up of always being able to get rid of your twitch also called a tick ,I am 54 yrs old and have had a twitchall my life a full body one it was due to nerve dammage from having polio as a baby I was born with a twist in the spine so nerve endings are not what they should be ,its been ***l living with it sometimes that hells caused by the pain of the constant twitching and somtimes by peoples attitude towards it,its difficult when eating out wich i dont do very often because of the stares i get , i have learnt to controll it to a certain degree but that in its self causes its own problems because the twitch then builds up inside and the anxiety that causes is sometimes much worse to deal with better to accept and deal with the problems for those who find it difficult to drink tea because of scalding there are special cups and other utencils you can get from web and also some of the larger chemists larger items such as tipping kettles non slip trays ect can also be bought via web sites some twitchies come and go like eye s and mucle twitchies but ive known people who have developed them later in life and they still have them after many years it can be life changeing depending on the severity of the twitch but not life threatning if you bring it out into the open with your family and friends they can be a great help ,hope this helps lizzy loo xx
    Anonymous 42,789 Replies
    • January 8, 2009
    • 11:03 PM
    • 0
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  • i've been feeling the same thing but i dont think its twitchingits more of like something epeleptic but im not sure coz i dont know how epilepsy worksbut ever since i was a child there are times that i cannot sleep because my body was jerking around especially my legs, i've been kicking around, twisting my body, my arms, my fingers and hands. there should have a lot of kicking around my bed up until i kicked all my pillows and i still cant fall asleep because i cant control my body movements. i really dont know how to explain it and i really want to know why is it happening to me. there has been a lot of twisting my ankles, my arms and legs that i feel like maybe my muscles or nerves are revolting thats why i cannot control it. it is really hard to control especially when im outside our home. it is not always happening though. i think it lasted for 15minutes-45 minutes. thankyou i wish you know what it is.
    Anonymous 42,789 Replies
    • September 8, 2009
    • 06:30 PM
    • 0
    Flag this Response
  • i think i have a similer situation. im only 17 female, and if ihad a rough night or if i sleep to long i wake up withm my hands shaking and cant control them. ive spilled so many things because of this. its been going on for a year now and no one really knows about it in my family it hurts keeping a secret from them but i find it emberrasing for me. i dont know what to do anymore. please someone hellp me
    Anonymous 42,789 Replies
    • October 20, 2010
    • 05:27 PM
    • 0
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  • My boyfriend has the same problem. His started 7 years ago when he was 14 after he got into a car accident. He complains of chest pains and he twiches jerks and shake. The doctors cant seem to find anything wrong. Im worried to death and dont know what to do.
    Anonymous 42,789 Replies
    • January 26, 2011
    • 08:05 PM
    • 0
    Flag this Response
  • I am 24, and for the last 2 years I have had uncontrollable twitching and jerking in my arms, shoulders, neck and head, sometimes the twitching lasts for upwords of 20 minutes, but usually just the jerking quick and its over. I also get numbness in my arms, severe migrains and memory loss. I have been seeing a neurologist for the past 2 years because my doctor originally thought it could be a brain tumor, luckily it wasn't. But still after 2 years I have no closure and nothing stops the twitching and jerking. I was put on Topirimate and Frova. But nothing. I'm sick of it. I break dishes all the time just dropping them or throwing them clear across the room, I spill drinks. I hate it. Its gotten to the point that I won't eat out because I am constantly knocking drinks over or hitting utensils off the table. Or hitting the person sitting next to me. Any one have any ideas? I'm going to see a new neurologist in September and bring up the possible causes other people have listed. But if anyone has any more I'd appreciate it.
    Anonymous 42,789 Replies Flag this Response
  • Talk to a cardiologist (specifically an eloctro =phisyologist) about Dysotonomia. Dysotonomia is a very general term because there are many forms of iit ranging from dizieness to Parkinsins. So I would recomend checking that out. The only thign that makes me think it might not be Dysotonomia is because it usually occurs is young teens; but not always.
    Anonymous 42,789 Replies Flag this Response
  • I, too, had uncontrollable t & j for many months. Five weeks ago I became very ill, uncontrollable shaking from cold, thirst, extremely tired. Was diagnosed with hypothyroidism (low thyroid functioning), low blood sodium. Was put on levothyroxin and after four weeks the t&J has stopped, regaining my strength, and mentioned symptoms are gone. It will still take two more months before I am back to normal. The story below has been submitted anonymously through our 'Share your story' feature:I have had twitching and jerking for nearly 6 months now. Not the under the skin kind of twitches, but almost like living in a fun-house where each limb, finger and body part moves whenever it feels like. My hands constantly shake as does my body in sort of a weak and trembling sort of way. I can't sleep with all the twitching going on, so I have to take an ambien every night. I quit drinking coffee, chocolate, sugar, alcohol, work out 4 days a week, yoga twice a week and because of this mess see a therapist once a week. I have been to the neurologist, psychologist, acupuncturist, medical intuitionist and chiropractor. No one seems to know what to do with me. The acupuncturist says I have internal wind, which points to a depleted liver. The medical intuitionist also said it sounds like my liver and kidney are depleted. I have been told it is not Alzheimer’s or Parkinson's which is great, but what is it and how can I make it go away? Does anyone know how to get this twitching, jerking and shaking stuff to go away?
    Anonymous 42,789 Replies Flag this Response
  • Even though I have had two brain MRI's - taken 5 years apart, which show I have a -" 5mm round lesion involving the tuber cinereum of the hypothalamus, which is consistent with a hamartoma," - they won't diagnosis it as the cause of my severe uncontrollable muscle movements. Why? you may ask. Because I took 300mg of Neurontin and within an hour I was having a severe reaction, a bright light in my eyes, my right hand felt like it was burning and shaking rapidly. When those two things subsided, my other movements began, that arm started punching, later my shoulders started going up and down. Movements all over. But most unusual was the emotional symptoms. I started laughing uncontrollably, but I kept saying, "Why am I laughing?" This isn't funny!" Doctors refuse to believe that drug could have caused it. I have found similar complaints that have been reported on Drugs.com from people that took Gabapentin. ~ We called the pharmacist and the doctor when this happened in 2008. The doctor's response was, "Side effects wear off." Thank you Dr. Cottle for your comment. In case any doctors are wondering what my diagnosis was - psychogenic.~ I disagreed. Boshie
    Boshie 1 Replies Flag this Response
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