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Involuntary full body spasms
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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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11 Comments Post a Comment
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585414_tn?1288944902
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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Avatar_f_tn
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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Avatar_f_tn
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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585414_tn?1288944902
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_f_tn
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?1288944902
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_n_tn
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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Avatar_f_tn
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_f_tn
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_f_tn
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_f_tn
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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1224427_tn?1267060693
check into brain tumors
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4288814_tn?1352255352
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
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Avatar_f_tn
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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