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Severe spasms that look like seizures

Does ANYONE have bouts of muscle spasms/contractions that look like a grand mal seizure?

My "episodes" start with minor tendon pulls that escalate into full body spasms. I have been told that this issue is not possible with MS. These spasms twist my left arm to the left and dig my nails into my palm. At their worst, I am doing involuntary situps and V-scrunches.

These spasms ate triggered by some medications, paint fumes, cigarette smoke or smell for more than a few minutes, extreme fatigue that includes extreme leg pain.

Has anyone had anything similar to this?

Please help.

Michele
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667078 tn?1316000935
Hi welcome. That was an old post from last year. The Neurotin is used for nerve pain. The Baclofen is used for muscle spasms but is often used with a nerve medication such as Neurotin. I take Zanaflex because Baclofen does not work for me.  They can even put in a Baclofen pump to deliver medication to your spine it spasms are bad enough.

I also take liquid Valium when my spasms are bad enough. I get diaphragm Spasms they are not sure exactly what causes them they come on and last several hours. Sometimes it is just hiccups and sometimes it is like having the wind knocked out of me. I have MS and Cancer so it could be either. All that matters to me is the medicine works.

Alex

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Avatar universal
Me too, MS and major seizure-like spasms! The Baclofen helps, but I am on Gabapentin also, the generic of Neurontin; have you been on this? It is used for epilepsy, but also neuropathy. And it has made a tremendous difference for me.
You didn't say.
Hope this helps.
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Avatar universal
Someone can have both issues.  Furthermore the period or what you say causes them sounds like an aura before a seizure. I have epilepsy and my cousin MS he has gotten seizures from medication. Even if you show NO activity for epilepsy.. it does not mean you don't have it. It took 14 years for them to diagnose me and that was with sleep deprived EEGS. Though the first 14 years had doctors witness me have grand mal seizures..<3
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Avatar universal
hi my name is cd and I could use some help with something, about 6 months ago to the day I began having these strange attacks where my right arm would become stiff and my hand only on this side would violently shake, nothing seems to preceptiate these events all my testing was normal no cause could be determined. anyone got any clues why this happiens to me so often ? I am 39 at onset of these.
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Avatar universal
I have exactly the same symptoms, upper back left side sever spasms every couple of seconds for hoursj at a time. The pain normally starts in the centre of my back and works up to my left shoulder and left hip - causing my left arm and leg to go rigid and shake. I've been cleared for MS by a neuro that spent a whole 4 minutes with me. Although meds have caused these episodes to reduce the time they last is actually longer.
Right now im just exhausted after having a 2 hour episode last night. I'd normally have one about ever other week and will take me a day or two to get over them.
I've had numerous bloods,MRI Brain & neck, back, CT scans etc and other than a couple of bulging discs , nothing s showing - in fact one doctor told me I was making them up and refused any treatment. My poor GP I'm his new stalker!! He is wonderful but doesn't really now where to turn next other than just putting up and shutting up.
At my Wits end now
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338416 tn?1420045702
My general neuro didn't know what to think when I described my full-torso myoclonus, and he certainly didn't know how to treat it.  If you aren't already with an MS specialist and you're having these problems, I would recommend it.
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1045086 tn?1332126422
It seems to me this topic clearly shows us just how large and varied the spectrum of muscle movement problems is.  Although the majority of us on the forum aren't dealing with problems as severe as the ones described here it is certainly a possibility with MS.

The WeMove site is an excellent resource.  You can use it to help better understand your specific problem with spasticity or movement.  You'll find the main page here:
http://www.wemove.org/

Most important....
Find a doctor interested in identifying and treating these distressing events.  They are real, potentially debilitating and often progressive.

NOTE: There is a FREE directory available on the above webpage to help anyone wanting to locate a doctor with experience in identifying and treating movement disorders.  I would think this is the type of MS symptom that responds best when treatments are ordered and monitored by a doc who has specialized experience with a variety of movement disorders.

Mary
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338416 tn?1420045702
Spasms, clonus, myoclonus... they're all different, but look similar sometimes.  I call it a spasm if the muscle is causing the problem - like last night, when all my toes wanted to point straight up, and my foot wanted to turn up to the side.  I had to get my honey to point my foot and push my toes down - I couldn't do it myself.

Clonus is the stuttering thing that your legs do.  I get this in the mornings especially.  

The hand locking up sounds very strange, especially if it doesn't hurt.  I don't know, but I have to wonder if it's clonus.

I get myoclonus in the back - my back arches and my arms and legs fling out.

I've been taking Baclofen for years, but recently I've noticed that it doesn't really control the kind of spasms that are the real problem - the feet doing weird things at night, the chest/esophagus spasm.  However, I've been taking Zanaflex, which is very effective.  One is usually enough for several hours.  I've started titrating down from the Baclofen, and aside from a little stiffness, haven't really noticed any problems.  (My feet spasm whether I'm on Baclofen or not.)
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Avatar universal
When my body locks up it is painful. The spasm starts from my lower back and my whole back goes forward and rigid and holds for a minute or so. The pressure on my back is painful, but more painful is an aching feeling in my lower back and between my shoulders from the tension afterwards.

My leg also does the spasm/kick thing you describe with the stuttering at the end. I've had that for years but thought it was just restless leg syndrome until I was diagnosed with MS.

As for the hand locking into a position, that sounds like what happened to my sister when her whole body locked into fetal position, so I have heard of parts of the body locking up, especially the legs.

I seriously doubt eating bananas will help. Muscle relaxers like everyone talks about may help. Bacoflin I think is the one most people use. Anyway, best of luck.

Keith
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Avatar universal
Keith:  Thanks for sharing the link, it was good.

Everyone:  Are these locked up moments painful?  When I had my last episode, about 2 weeks later my hand bent towards my wrist and my fingers all locked up bent but apart (if that makes sense!).  This was not painful at all but lasted about  1 to 3  hours and repeated itself for the next couple of days.  

I also get leg spasms or something when laying in bed.  If they get really bad both legs will go and the feet will stutter at the end of the movement for a few times.  I think these must look like seizures.  They are very painful, but I think it's from the force of the jolt on the muscles or fatigue.

I asked my neuro about both.  For the hand he said "I have no idea, eat bananas"  For the legs he said "it's perfectly normal"

I hope you find some relief,

Corina
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Avatar universal
Keith again,

Wanted to add this as well. Really great website for MSers. And according to this gentleman (who always seems to be very informed about MS and its nastiness) the severe spasticity/muscle spasms/rigidity are all very much a symptom of MS.

Have a look at this website's article and the comments section. Many people are having the same problem as you and I. Again, best of luck.

http://www.everydayhealth.com/blog/trevis-life-with-multiple-sclerosis-ms/multiple-sclerosis-spasticity-do-you-have-this-symptom/

Keith
Helpful - 0
Avatar universal
I have exactly what you are mentioning right now.

I was diagnosed this past september with MS (on my birthday-happy birthday me). It started off with minor right leg spasms when laying down at night to full out leg jerking (like I was kicking something).

Now it is a non stop spasming/jerking in my right leg and my lower back. I have been told too that it looks like I'm having a small seizure.
When you say full body spasm do you mean literally a spasm throughout your whole body or like me is it simply the lower back spasming and causing your upper body to jerk and lock up?

If that is the case I think some others who have commented have misunderstood what you meant. I'm not having a full body spasm, but when my lower back spasms it causes my whole upper body to lock up and jerk involuntarily. And like you I am experiencing pain (my lower back and between my shoulder blades from the tensing of the muscles).

My sister also has MS and a few years ago she had a flare up that caused her entire body to lock up into fetal position and she couldn't move. (much like what you are saying your arm does).

When I first tried to find information about this it said that this wasn't a MS symptom, but further research suggests that it is, and like I said, my sister had a full body lock up. My neuro also is having me get my bloodwork done to check for any vitamin deficiency. I believe it is a deficiency in Vitamin B or D that can cause these kind of spasms.

They are not giving me pain relievers but I am picking up a prescrip today for some serious muscle relaxers which are supposed to help. I would suggest talking to your neuro about getting some muscle relaxers and digging further into seeing if this is a MS symptom, I can't seem to find conclusive evidence that it is, but what I have found suggests it is.

I would hope (for your sake and mine) that like most MS symptoms this is one that will pass because it really is a pain, and severely limits what we can do (I cant even drive right now because of the severity of the spasms).

Anyway, just wanted you to know there is someone out there (in god-awful hot southeast Texas, which is probably why my symptoms are flaring) who is experiencing the same thing as you. Hope you get better soon.

Best of luck
Keith
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Avatar universal
It's possible there could be more than one dx there. SMS might also caused by antibodies. I think the most recent research on it places it on the autoimmune spectrum of diseases. If you have one, there might be more lurking in the background waiting for a chance to erupt.

The way the hospital staff treated you in the midst of this is shameful. Muscle spasms can be powerful enough to break bone. It sounds like they were dumbfounded and had no idea what to do. Good for you, filing a complaint.

Having experienced a severe mid-section spasm or two, baclofen helped take the edge off but not by much. If I remember correctly, stiff man syndrome is treated with benzodiazapenes. Not sure if that stops the episodes. It might just tone them down a tad.

Hopefully, there's a specialist nearby familiar with dystonia, SMS and MS. It might be necessary to go to a specialty clinic, like Cleveland or Mayo to find out for sure.

Best wishes in finding someone to help with this. It sounds frightening, and miserable. :-(
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Ohhhh sorry, I should also make a point that having a dx of MS or anything else doesn't negate the possibilities of 'also' having mental health issues too but already having a dx neurological condition such as MS can actually cause mental health issues.

Just a thought but have you had your muscles activity tested? i'm also wondering if the dreaded 'MS Hug' could be within the possibilities too, its not often understood by dr's outside of MS. Has your neurologist said anything about these 'fits' or spasms?

I have intercostal muscle spasms, that literally pull my ribcage down whilst in the hard contraction and then they release, its half my ribcage very visible, if your gut (sorry forgotten the technical term) muscles are contracting because of the HUG then i think the evidence is found in the spine.

Just thinking out loud but have you had a full spinal MRI looking for lesions? If you haven't then i'd be getting that posibility tested too and i would make sure your neuro is doing 'something' to help you, if not then find your self another neuro who totally understands MS.

Cheers............JJ
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987762 tn?1671273328
COMMUNITY LEADER
It would be out of charactor for me, if I didn't point out that mental health can actually mimic seizures and many other medical conditions, so mental health isn't outside the posibities. Assuming that you have numerous times since your fits started, have been 'fully' tested for abnormal brain activity and apart from the visual 'similarities', none of the testing (EEG, MRI, Blood etc) have indicated what you experience, could be from a physiological etimology.

Apart from being 'told' its psychological, have you ever been tested for mental health? I'm assuming you haven't or you would of mentioned this, please find your courage and face this possibility, and get a full mental health assessment. This will provide you with 2 things:
1) If you do have a mental health issue, you can start treatment and change your tomorrows!
2) If you dont have a mental health issue, you have another diagnostic peice of evidence that you can use to shut down the idea its mental health!

Either way its a win win situation for you, if you get assessed for mental health along with all the other possibilities. Please dont neglect mental health testing because your thinking it would mean these fits are not real. They are real despite what causes them, its the treatment and outcome that change with a correct dx.

Truthfully, it shouldn't make a difference to you or anyone, what is causing you to experience these fits, what you should be looking for, is for them to either stop or be more under control by getting the 'correct' medical treatments available to you. From my perspective, it shouldn't matter if it is mental health or not, finding a solution that changes your tomorrows needs to be the primary focus, so get tested and know for sure!

Cheers...........JJ    
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338416 tn?1420045702
While I haven't experienced full-body spasms, I do have a problem with clonus of the torso and legs.  The legs and torso stiffen and stretch out, or curl up.

Full-body muscle spasms aren't usually seen with MS.  Dystonia sounds more like what you're experiencing, but I don't know enough to say for sure.  Usually dystonia comes from damage to the basal ganglia, and MS damage is usually in the white matter (at least the visible damage is!)

Just at a guess, perhaps it's MS disease activity that appears to be a full-body spasm.  You definitely need a health professional on your side that can treat you.
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Avatar universal
I don't know where you live but I certainly would pursue the hospital with a complaint.  What they did is not too legal....did you sign discharge papers?
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Avatar universal
the fact that fumes bother you and bring on these attacks, for lack of a better term, concerns me that it is connected with some sort of an allergic condition, not your MS.

Just a thought
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Avatar universal
Thanks for sharing that information.   I hope you do not have these tremors very often.

I've been told that these spasms aren't possible.  I have yet to figure out why.  The brain controls the body, the brain is damaged, and the outcome of the damage varies from person to person.  What's so hard to decide on that?  

I can tell you that I have freaked out a LOT of doctors, nurses, EMTs, and family members.  These episodes are quite painful, so ERs want to give me pain meds.  These don't help and I'm allergic to morphine based meds anyway and the pain is from the severity of the spasms. Pain meds don't even have an affect on the spasms.  I've been told I'm crazy, literally.  

Very recently, after being refused medication at an ER, I asked the doctor to make a fist and hold as tightly and for as long as he could.  He refused.  I was then discharged and rolled to the front door to wait for my ride home alone and I was still have spasms.  I file a complaint with the hospital.

Thank you to everyone who has responded to this post.  It is very much appreciated.

Michele
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1734735 tn?1413778071
Hey there sugar (sorry couldn't help it)

I don't know about grand mal seizures.

One of my lesions is in the right temporal lobe which is apparently the area responsible for seizures. When the whole MS thing started last year I did have the shakes and tremors through my body.

Since I developed a lesion in my neck at c4-5 my tremors are now more in my left arm and upper body. This only happens when I am having a relapse or episode of unwellness.

Sometimes, in my mind only, I feel as if I would like to just throw myself on the floor and shake the whole thing away. But it hasn't come to that.. hopefully never will.

Blessings
Alex
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Avatar universal
Thanks for the responses. I do have MS. I was diagnosed in 2001. I started with four lesions, now I have eight. My CSF contained three oligcolonal bands, two indicate MS. I have many of the typical symptoms such as extreme fatigue, low stamina, optic neuritis, and muscle weakness, especially in my left leg.

I looked up dystonia and stiff man syndrome. Stiff man syndrome is a possibility, but my symptoms do not totally fit. This doesn't mean that that's not my problem, I just don't know.

I have been tested multiple times for seizures. I do not have any seizure activity.  I have also researched all the types of demyelination disorders. MS is the only one that fits.

The main question was is there anyone out there who has or has seen these types of episodes?
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Avatar universal
Not sure if this fits but it sounds kind of similar, have you ever come across something called Stiff Man Syndrome?
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987762 tn?1671273328
COMMUNITY LEADER
Hi and welcome,

Following on the same line as Lulu, have you been dx with anything remotely related to the brain, eg MS, epilepsy, mental health etc? Tested for all the various types of seizure's or is this 'not possible' comment coming  based on your description of what you experience?

Seizures are not unrelated to MS, though what you describe doesn't sound quite right though for MS. Its this bit "doing involuntary situps and V-scrunches" that has me wondering if its not even related to seizures, is it slow shortening/tightening that pulls you into this position or a violent jerk?

Theres a really great site called 'wemove.org' that has just about everything you can think of in regards to movement disorders, so it might be worth having a read through it. Also found an article on all the different seizure, with descriptions etc that also might be worth you reading, see below...

http://www.buzzle.com/articles/different-types-of-seizures.html

Cheers...........JJ
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572651 tn?1530999357
hi sugarflowers,  you don't say if you have MS, but the reaction you are listing doesn't sound like one to MS. At least not to me.

Can you give us a few more details about your physical problems or diagnosis?

best, Lulu
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