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Involuntary full body spasms

   I'm tired.  It's been over three years since the spasms started and no closer to an answer.  I'm a happy person, prone to burst out in song with no music playing and love to dance.  This is wearing me down.  I find myself grasping at enough straws that I stopped looking for answers on the internet for a while, too depressing....  I'm trying, again, to see if anyone has an answer.  It seems, to me, like it's coming in cycles with the beginning being off-balanced outside to an almost cessation of spasms for about two weeks, then back to spasms and off-balance.  My neuro's at a loss for an answer, I'm beginning to feel a loss of hope.

I started having a problem with my balance, like I was slightly off-balance, then I would be standing and my head would jerk backwards.  That progressed to a tremor in my right hand, to the point where I couldn't move a measuring cup full of water without spilling a bit of it.

I was finally sent to a neurologist who diagnosed very early stages parkinson's disease.   I saw a movement disorders specialist who diagnosed a parkinsonism from psychiatric meds I'd taken years before but my psych said it couldn't be that because the symptoms would've gone away after the meds were discontinued.

Anyway, by this time, my legs were collapsing under me without warning.  They tried physical therapy for the balance problem and the therapist was pulling up on my neck as part of it.  Why?  I'm still not sure.  I was also having a small problem with anything placed too close to my face, I would jerk backwards, my legs and arms were jerking in a weird overreaction to things and I was telling my neuro and getting more scripts.

I finally said enough, after 4 years of treatments and it was getting worse.  i used a wheelchair  to shop and sometimes at home.  I was using a cane and a walker.  By then things had progressed to violent full body spasms.  I saw a neurosurgeon, who in the first visit called it hyperreflexia, but the second time I saw him said he didn't know what my 'jerking' was about but my tests were fine.  He couldn't help me.

I've been diagnosed with Fibromyalgia and a 2nd opinion and put on Lyrica.  The full body spams are reduced enough to where I can drive again.  They mostly come when I'm tired or my senses are overwhelmed.  I recently attended a high school graduation, flashes going off, lots of people, a tornado warning, long trip from one state to another....spams were having a field day with my body.

I sent the wheelchair back home, the walker is in the shed and I rarely use the cane now.  I recently went back to my clinic for swollen feet and ankles, the new doctor checked my chart and found an echocardiogram  from 2 years ago which showed an ejection? rate of 30% and sent me for another echo.

I'd had a halter monitor on for 30 days which showed an episode or two, I think, and though I'd called the heart doctor the neuro sent the test results to, I didn't get a call back.  

Flickering lights, light from a laser pen, flicking a string for my cat to play with, sudden movement at my face, reflexes on overdrive.  None of the recent tests showed anything.  I've since been tested for Stiff Person Syndrome.  Anyone who knows me well could see that the symptoms matched me almost exactly, the progression almost the same but the test was negative.  I walk, and sit, bent forward at the waist which means my back is constantly aching when I stand.

I just had an 8 hour eeg but don't think it's going to show anything either.  Almost every test taken has shown I should be normal, what's normal anyway? lol.  I think I've had every tests, some several times, but nothing shows, which is good and bad, lol. I've been in car accidents, broken ribs, my nose and been in pt for back muscles so tight I couldn't move them.

One of my sisters also had high blood pressure and had a stroke.  After an MS panel was taken, it turns out I have a gene which could cause a stroke, I can't remember it right now.

I'd forgotten to add about a few spells of being unable to talk in English, I couldn't think, but I was giving someone hell in a language I'm hoping isn't on earth. This has become a regular occurrence.  I have a list of problems I've been diagnosed with but none of which would explain the spasms.

I had a severe nervous breakdown almost 15 years ago and was put on a lot of different meds.  I've had several doctors hear I had a breakdown and could tell they stopped listening after that, their diagnosis already made.  This is NOT psychological.  This is a physical problem.  I need answers.  Could this be a deficiency of some kind?  I'd faithfully do whatever it took to stop the spasms which I refuse to let rule out most of what I want to do, but being unable to drive really puts a crimp in my lifestyle.

I will take ANY test, do anything to get my life back to what I consider normal.  I'm only 54 but am less mobile than my 82 year old mother-in-law.  I have plenty of life left to live and really want to enjoy it.
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Avatar universal
As I was reading your story, I thought to myself “please don’t let him/her be my age!!” But, sure enough, I am 53 yr old F., with almost exact same story! Not kidding! The only difference is I have had 3 low-back surgeries, and in need of 4th so at first I just lumped all spasms with back. However, the “weird” ones (not normal back spasms) started out mild,  going in a counter clockwise direction, in a square type area. Example: L-Hip very low at groin level, over to R-Hip then up to R-Collarbone at shoulder, back over to L-Collarbone at shoulder, and then back down to L-Hip. That is my “square area”. Now, picture the square cut into four squares. Now, areas are in order of spasms ~ L-Hip, R-Hip, R-Collar, L-Collar. So the spasms basic like travel counterclockwise in that order. ALWAYS. IT NEVER CHANGES?  That was where it started almost 2 years ago. It slowly started to expand further down into the legs or up into neck & chest area. I got very concerned when it began to creep up on my neck, squeezing my neck and face enough that my breathing and voice was affected. I could hear the breathing change & my voice sounded like I was squeezing voice box. Very weird a scary. But Dr.’s didn’t seem to think it was serious. For 2 years I’ve been telling all Dr.s & family but no one seemed to care. Well, now it is FULL BODY SPASMS that are preventing me from walking. I am just about ready to give in and go to ER but decided to look on the net. Out Hosp. Is crap!! My feet & ankles are swollen (again) & I have weird **** with that too! My skin hurts, bright red, edema area slowly started to harden! Yes, harden. At first I thought wow, a spasm on my feet now...WTF...but I soon realized it wasn’t. The edema was somehow hardening, making the R-side of my R-Foot look marbled? It was restricting my foot movement. Now, a week later and almost my whole R-foot is hard, plus my ankle, plus half way up my leg. I feel like I have shin guards on that are too small and “press” into my legs when I walk.  Lastly, when I stand...I am in a hunched over position just like you, but if I make myself stand up slowly pulling out of the spasm, then I can walk upright. My whole entire body is just a huge mass of pain, muscle spasms, and bad spine issues. I am almost to the point that it is becoming too hard to live in this body any longer. I will have 4th back surgery and hope for correction & getting my life back. If not, then I’ll be done. Oh, & I feel like I am literally “ripping “ muscles apart when I change positions or stand. Then I rest and they feel better but then I have to move again. OMG. I just don’t know why? Prayers sent to you in finding an answer or a cure. If so, please let me know! Tx! @PamelaR
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Avatar universal
I’m sorry you’re going through this. I myself have been going through something similar. With being an EMT in my 20s it’s taken a huge toll on my life. I’m now home bound. I was originally diagnosed with Pseudoseizures.. was referred to Cardiology eventually who implanted an internal heart monitor although he suspects Dysautonomia it’s basicaly where different parts of your nervous system over or under react. The nervous system controls everything  in your body. And can do a lot. Between that and slightly low electrolytes every time I was sent to Gastroenterology,  Endocrinology I will see soon  and I have seen multiple neurons even have been to a huge university hospital ranked in the top 10 in the Us.  Sometimes it takes looking outside one specialty. They wanted me to see psychology so I went for consult, they they highly doubt that’s what’s going on. .. I’ve also seen a pulmonologist  and had a pulmonary function test come back at 33%.. that was our first ABNORMAL test result other than a slight arrhythmia off and on  that pushed my heart rate a little too high and dropped my blood pressure.. the meds you’re on could be making things worse for you too if they aren’t right for you... a lot of medications can make conditions or symptoms worse because of how they work in the body. Id been hospitalized every 2 weeks from November 20th to March 23rd.. multiple tests done and even repeated and still searching for a complete answer. Also side note: some tests even though they are “within normal limits” may not be normal for you. Magnesium is one of them. Magnesium deficiency so severe it can cause both  your blood calcium to be low and. Cause abnormal heart rythms can still exist even if your blood test results come back “normal”. All of your electrolytes work with or against each other so if one is off, they can throw off the others. Some are regulated by kidneys and some the liver ect... maybe it would be helpful to ask to be refferred to endocrinology or Gastro just to be safe. You mentioned “hyprereflexia” can come and go with abnormalities with calcium, magnesium, PTH, phosphorous and Potassium. Your whole body depends on electrolytes.. deficiency Can also cause muscle spasm
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Avatar universal
My partners legs gave way last week for no apparent reason, banking her head and getting a black eye. One week later, she has started with violent body spasms, at worse happening every 10-15 seconds. She has had tests inc s brain scan at A&E and has now been referred to a neurologist. She has a temperature of 37.5, but no infection has been found. Taking paracetamol lowers her temperature and seems to help the spasms, she is 53yrs old! You guys any updates since 2014, thanx.
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Avatar universal
I have Fibro,R.A. And soriatic artritis! Some of the conclusions I'm drawing is.
Spasms r from tighting of the muscles especially in chest area which it cycles from stage of stiffness,stage of swelling, pain,shortness of chest breath.after discussion we believe its sort of a Circuit breaker?! your body reaches its threshold of painthan shuts it self down. I personally have to lay down on floor and body goes into shutdown mode without no loss to bodily functions, just one big body spasm?!it is very painful although I have a Hi tolerance for pain? My Nuero called it a perplexia strike down  My fibro started in feet and took 10 years to climb,Up to chest area ! And now it is in my lower jaw and burning behind lower and lower ear areas . My fibro loves hanging out in my spine from lower back to low neck it is a constant problem daily. Hang in there I have a couple tricks that have been helping but once you sit you'll stiffen right up!! Only 52 years old
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Avatar universal
Hi, My wife has started spasms like yours. So far the Doc thinks it's something to do with mixing antidepressants. It is very upsetting for my wife and I to deal with. One thing I found by accident that helps for a short time is if she takes benedryl. Only gave her one pill and in 20 minutes she calmed down. Any help would be great. ***@****
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4288814 tn?1352251752
You know I have Fibromyalgia for 15 years, and I had implants that mafe me sick so I had them removed, I have Diverticulosis and my colon surgeon said I had the most spastic colon he ever saw, Before I had the implants out I had so much neuro problems that I thought I had alzheimers at 42, anyway I still have a symptom like yours. It happens when i am over stimulated and tired around supper, it feels like a mini seizure, or a brain spasm, like a quiver in my brain it is so bothersome, I fell recently and sprained my neck, anyway it sounds like what you are describing nobody can figure it out, I have chemical sensitivity due to the implants, but i have a startle response every time I wake up even from a nap. This is daily 3 or for times, as I am drifting off to sleep this happens as well, it feels horrible
Helpful - 0
1224427 tn?1267057093
check into brain tumors
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Avatar universal
One year ago, I had a lot of wierd head and left-body jerking and general restlessness. It caused considerable embarrassment in small-group meetings.  I started taking  Clonazepam which stopped the movement within hours.  I am still taking it, although I have developed new symptoms that remain undiagnosed.  I also have to watch how much I take b/c it is asedative and does cause drowsiness.
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Avatar universal
My neuro thinks the seizures are from a motorcycle accident back in 2005 which left me with a broken hip and split face shield.

I've actually cut out all caffeine, which worsened the symptoms and all chocolate.  I make sure I get enough sleep and am taking supplements now, folic acid, magnesium, potassium and fish oil.  I'm also eating tuna to help with the seizures and noticed that the above combined measures have slowed down my symptoms quite a bit.

A year or so ago, I'd grown frustrated with the growing list of tests which returned with negative results or a diagnosis which had nothing to do with what was going on but pointed out other problems.  My psychiatrist suggested treating the symptoms until the cause was known.  That helped me to focus on that for a while.

I decided to help myself while waiting for a diagnosis and started going through the internet looking for any answers which have helped.  Thank you for your advice and I will be checking out your suggestions.

Gail
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Avatar universal
Finally some diagnosis! I don't have neuropathy (Thank God!) but a 36 hour EEG finally, finally recorded seizures.  My neuro said (something not revealed before)that the previous one had me at borderline (whatever that means).

I am also pre-diabetic with a gl of 125 and my tryglicerides are up.  The neuro put me on Lamictal immediately and I've reached a dosage of 200 mg a day (100 am, 100 noon).  It took a while for the spasms (I've been calling them that for so long that I can't think of them as anything else) to slow down but they haven't quit entirely.

I've noticed that around 6pm (supper) that I get a headache and that it only goes away when a spasm happens.  I'm calling my neuro tomorrow about it because tonite I was eating supper and suddenly the light was too bright and I had to keep my eyes shut because the light shining on my plate was blinding me.

I am tickled to say that our home is slowly starting to look better.  I have been able to help my husband shovel snow (something I haven't been able to do in years) and find I have a bit more energy than I have for a while.

I went with my daughter to a social place for mental health consumers and love being there but had problems there.  One day in particular was pure hell for me.  I'd had a slight headache (more like intense pressure) near my left temple but it had lessened by the time we arrived at our destination.

We walked into the room and I couldn't keep my eyes open because the lights were so bright and the pressure in my head intense.  My daughter had to help me to the ladies room and I sat there with the light out for about 5 minutes.  That helped until I sat down at the table.  Again, the lights went bright but this time voices were bouncing off the wall and assaulting my eardrums.  I realized, the next day, that I should've called someone to take me home but I stuck it out until 3pm.  By that time I was weeping.  What sticks out to me was that it wasn't an all day thing but it came in waves.  What was scary to me and my daughter were the spasms which accompanied the bright lights and loud voices.  She was afraid to leave me alone for long and frankly I was scared also.

Though I'd been back to that place several times since, my only problems were the voices.  I'd figured out that it isn't so much the voices that bother me but the conversations around me.  It feels like my brain can't process all the different conversations going on and my body reacts to it.  It happened at my uncle's viewing last week.  We were sitting in the lounge, drinking coffee (I had unleaded) and talking about this and that.  The light was not too bright with white walls but I was ok until more people came in and the noise level rose.  I said my goodbyes and told my ride I had to leave immediately.

My sister has grown accustomed to my problem so she got me to her car before a particularly violent spasm hit.  I'm a stubborn woman and refuse to let this weigh me down for long but I've had to limit social occasions because I know that there will be problems.   I'm happy that answers are finally coming after all these years but wish it hadn't taken so long and wonder if there will be further consequences from that long wait to diagnosis.
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Avatar universal
I think it is a partially disruption of oxygen which carried by carotids to the brain- maybe need a scrreening on the carotids?
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Avatar universal
i have peripheral diabetic neuropathy and I get violent spasms in both feet, legs and groin. My bladder died 5 years ago so I have a catheter.   I have spinal stenosis also, bronichial asthma, COPD, allergies, colon cancer in remission, fibromyalgia,  and chronic arthritis.  I was previously quadrapeligic but had C4-C5 amd C6 -C7 disketomy with spinal compression.  I have lived with chronic pain for years. I take 31 medications including methadone, lyrika, bacfolen.   My new lady doctor recently hospitalized me for a week with septis. While hospitalized she cut my medicines in half.  I recently started physical therapy which has harmed me and now I am back to square one with the awful pain.  I would not advise therapy for anyone with this nerve condition.   However cutting the medications was the right thing.  I'm lucky my current doctor is very thorough, most doctors don't bother to give one a complete examination; all they are interested in is the pay check.  The best advice I can give is find a good doctor and don't settle for a doctor who is not thorough. If they aren't report them to the medical board.  .It is your life and not theirs, so demand the best.   Over 90% of all doctors need to be sent back to medical school.  Do you realize that most doctors just barely passed the state boards and left medical school with a "C" average.  This should not be.  Time to write your congressmen or congresswomen, Your US Senators, The President as well as your state elected officials.
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585414 tn?1288941302
There are a wide variety of medications to treat spasms. But it depends what the cause of the spasms are. Then they can see what to do from there to treat them. What helps me with my specific spasms might be different from what is used for another neurological disability. The various anti-spasmodics I take are helpful but are used long term with caution because of long term side effects (but can be if needed) but many neurological disabilities (including what I have) have more targeted treatments that treat the underlying condition rather than just the spasms (I take some as well). Find out a more precise diagnosis and then more information could be given to bring to your neurologist on what might help.
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Avatar universal
I went to one.  She diagnosed abasia atasia (I believe that's what it was).  When I looked it up, it really ticked me off.

She prescribed physical therapy which only made the spasms worse.  I actually injured myself during one of the sessions.  I believe the spasms actually started in a bout of therapy before that.  My neuro sent me to therapy because my legs collapsed under me without warning.  I used a walker for a long time because of it.  The physical therapy included gently pulling up on my neck.  Why?  I don't know.  What I do know is by the time they were through with me, the therapist was suggesting a wheel chair...

It's been years since those first symptoms.  I rarely use a cane any more.  The wheelchair has a different home and I walked around Buttermilk Falls, taking pictures, for over an hour without a problem.  The spasms, nowadays, seem to come more when I'm relaxed and when I'm under florescent lighting.  I hate going to the grocery store anymore because it's a damned good bet I'll be stopped in my tracks by more than three bouts before we leave the store.  It's embarassing.  I keep my eyes closed during the spasms because I don't want to see curious stares.

Anyway, I will bring up tardive dyskenesia.  The MDS did say no meds would help but, damn it, there's got to be something to stop the spasms.  I can't drive because I don't always have warning before one begins.
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585414 tn?1288941302
No of course a neurologist is there to provide a diagnosis but you should bring the names of those disabilities to his attention. Certainly tardive dyskinesia as if a person has that certainly medications can't be administered or it will worsen it. And its treatable. It could several things at once each with different treatments. I agree its best to accept any aspects of your disability that can't go away once its diagnosed and treated but that should be done first. If your neurologist can't help you obtain a referral to a trained movement disorders specialist.
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Avatar universal
My friend suggested lupus, which has seizures as a symptom.  I do have a rash on my face, but it's been diagnosed as rosacea.

This is one reason why I stopped looking for months.  There could be so many different diagnosis but none fit completely.  No point in causing more frustration.
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Avatar universal
I checked out tardive dyskinesia and agree it's possible, I clicked on a link to Complex Partial Seizures and found it's close also.  I stopped checking for symptoms and possible diagnosis on the internet because it started to consume me.  I decided it was best to accept what I couldn't change, change my life to accommodate it and hope someday a diagnosis would come.

I've noticed caffeine, stress and not enough sleep makes it worse and that although I've woke up in the beginning of a spasm, they rarely happen after I go to sleep.  Lyrica helps to keep the severity down.  They tend to get violent.  Ex. Sitting at the computer desk, my head will go far enough back that I'm afraid I'll snap my neck.  Once they start, I cannot stop them, it scares me sometimes.
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585414 tn?1288941302
You could have multiple diagnoses but the phrase "it couldn't be that because the medications were discontinued" would be true for temporary movement disorders such as akathesia but not for tardive dyskinesia (google "Patient Education Tardive Dyskinesia", that would include everything you took in the past). That may or may not be part of what is occuring but have a movement disorders specialist rule it out as it can occur in a variety of forms as in me and it is not reversible but treatable.
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