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Shakey legs and arms
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Shakey legs and arms

In reading what others have written about the experience with RLS, I find that my case is a little bit different.  Not only do my legs start jerking but my arms do as well.  I take miapex and that seems quiet the problem.

The other thing is that it does not just happen at night.  I have to take mirapex in the day time as well.  If I do not my extremeties start going crazy.  Another thing is that my limbs not only jerk, the hurt as well until they are quieted.

All I can say is thank god for mirapex and gabbapentin.
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22 Comments Post a Comment
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220917_tn?1309788081
Hi and welcome!

I wish I knew more about the drugs you mention.  When Quix is feeling better, I know she'll weigh in on this for you.  She is our resident physician and expert.

In the meantime, RLS does not in my experience or knowledge produce jerking.  It can make you desire to get up and move, that's for sure.  Perhaps I am wrong about this.  Who prescribed the mirapax and gabapentin for you?  Is the mirapax for RLS?  

Does the physician know that your limbs actually jerk or twitch?  You must tell your doctor.  Do you have any other symptoms?  RLS is painless, too.  It's annoying as all get-out, but there should be no pain.

You need a neuro work up by a good doc.  Do you have one?

Tell us a little more if there's anything to tell.  How long has this been going on?  (Isn't that the name of a song?)  What is your age?  (See how I always sneak that in?)

Take care and feel well!

Zilla*
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398059_tn?1312888668
The jerking has been going on for about 2 years; the pain for a year or so longer. I could not sleep at all.  Finally, i started seeing a new neurologist and he prescribed Gabbapentin.  Man, that was like a miracle.  The pain almost vanished; I could actually get some sleep.

About year and a half ago the jerking return and so did some of the pain.  My doctor then prescribed Mirapex and the jerking and pain lessened again.

The jerking usually causes my arms to jump a couple of feet; sometimes more.  It is kind o like trying backhand someone acros the face.  My legs do the same sort of thing.  Time of day does not matter.
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220917_tn?1309788081
I keep thinking McBacon!

What does your doc say?  RLS?  It doesn't make sense to me....
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398059_tn?1312888668
The only comments I remember were to try these drugs they should help.  And they did.
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220917_tn?1309788081
Hmmmm.  I would come right out and ask your doctor what the heck is going on.  You need to have some kind of diagnosis.  (Maybe it's just me....too many Forensic Files shows that I just love!  Ask penn!)

It's your body.  You deserve to have some answers, dagnabbit!  I'm glad the symptoms are being treated, and perhaps it's just a fluky thing, but I suspect there is a diagnosis that he has to have decided upon.  Your insurance company would insist on it, believe me!

When do you see this guy next?

Z*
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398059_tn?1312888668
I am pretty sure he is treating neurologic pain and RLS.  I see him next month sometime.  I will get a more difinite diagnosis.
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333021_tn?1207763233
Yes I saw McBacon also.

My Mother has had RLS for forty years . Started treatment maybe twenty years with many rx.s . They would work for awhile and then loss their effectiveness.  Two years ago she started on Mirapex ( 4x day) and what a life saver.  And its still working .

Her legs and arms jump ( use to ) and sometimes several jerky movements in a row , up off anything they were resting on. It was all very frustrating for her . And having to get up and walk in the middle of the night , must have been the pits. That was every night .  Maybe the pain is the aftermath of the jerking ???  Anyway   I am sooo glad you found Mirapex.   Don't know what Gabbapentin is , does it help you sleep?

Jo

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398059_tn?1312888668
Gabbapentin is for neurologic pain.  Yes, the Gabbapentin helps me sleep, but only because it relieves the pain.  I do not know how to describe this pain other than to say that wen my wife would simply brush her hand softly along my thigh it felt like she scaping a claw down my leg.

For a while before the Gabbapentin I slept mostly due to exhaustion.  You probably wonder  why I would let this last at all with treatment.  A little due to prider, but mostly due to depression caused by the chronic illness.
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398059_tn?1312888668
typo "with treatment" should have been "without treatment"
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220917_tn?1309788081
Yes, depression with a chronic condition AND little sleep is totally understandable!  I hope that has dissapated for you.


I am glad Jo cleared up my misinformation about the jerking.  Thanks!

RLS used to be referred to as Restless Leg Syndrome, and is now called Restless LIMB Syndrome, because it affects many people in all four limbs.  If this is your only diagnosis, though, I would be surprised.  Why the pain?  

Have you ever had a rheumatologist look at you?  Is the pain better with better sleep?  I know some people experience the kind of pain you are describing with Fibromyalgia.  It may not hurt (no joke intended!) to see what a rheumy has to say...

Take care!

McZilla*
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398059_tn?1312888668
I have MS.
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333021_tn?1207763233
Mc,         I guess the MS is the reason for the pain?    Are you having spasms as well?


I just called my Mother and asked her if she had experience pain with the RLS and she said she didn't have any  " except for the pain in the a** " that it gave her . That's my Mom!!!  She's sweet and  was concerned , said to tell my friend to see his doc soon .  

Thanks for the info about the Gabbapentin .

Take care        Jo
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220917_tn?1309788081
How did I miss that?  I'm sorry!

Yes, MS will certainly account for the pain.  Especially in the limbs.  The shaking, or feeling shaky can be traced to the MS as well.  Twitching can be part of all the MS fun, as can RLS, as you know too well.

What kind of medication do you take to stop the progression of the MS?  Do you find it easy to speak with your neurologist?  Do you have an open line of communication?

Besides the pain, how else do your MS symptoms rock your world?

McZ*
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233622_tn?1279338505
RLS is part of MS?  I know I have RLS but have not talked to my doctor about it yet. It does make it very difficult to rest in the evening. I have some trouble with RLS during the night too. Is this important to mention to the MS doctor?

L
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398059_tn?1312888668
One neve knows what be caused  by MS.  MS is the result of one's immune system attacking the brain.  So, almost any symptom could be part of MS.
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398059_tn?1312888668
Pain and twitching and depresion is only part of what can go on with MS.

Conitive problems and partial bindness also are problems as well.  Lost most of my vision in my left eye.
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220917_tn?1309788081
I'm so sorry.

You sound like you've got an interesting story to tell.  How long have you had MS?  How did your diagnosis play out?  Do you mind sharing it with us?

I hope that you are in the hands of a good neurologist who has you on medication.

Feel well!

Zilla*
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228463_tn?1216765121
Gabapentin is the generic name for Neurontin.  I just looked it up and it is also considered an anticonvulsant.

I have said before that God speaks to me thru the internet but today it is very obvious.  I have started another relapse and have been shaking my booty off (too bad that's just a saying - could stand to loose a bit of booty! Ha!)   Anyways, I felt like I was starting to get over anxious from the shaking then I read this thread.  My doc at the Mayo clinic had prescribed an anticonvulsant but I had not had it filled because I was doing better and I don't like to take any extra meds, but now it looks like I will need to do that if I want to try to get some relief and be able to function again.  The shaking makes me feel like every physical thing I do is "choppy" and exhausting.  Just reaching for a pen takes three stop - starts and then the nerve pain, how much fun this is - NOT!!!

Thans guys for this thread and all your info!!    
Take care all!
Kristin
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147426_tn?1317269232
I have been interested to see the multiple people who describe involuntary jerking with their RLS, and who also have so pain associated with it.  The painful part makes me think more is going on than just the RLS and YES, I think this should be brought up to your neurologists.

RLS is being referred to by many neurologists as Restless Limb Syndrome, because it is well known to occur in the upper body also.

RLS with jerking sounds like a more complicated type of movement disorder.  Interesting reading on this can be found at:

http://www.wemove.org/rls/

which is a great site in general for all movement disorders.  For those of you that have a lot of jerking also read the section on that site which discusses "myoclonic jerks."

Yes, there are several anticonvulsants that are used for neuropathic pain.  And it makes total sense.  In a seizure the brain neurons are firing like mad and need calming down.  In neuropathic pain the specific pain fibers are firing like mad telling the brain they have injury and pain occurring.  They also need calming down.  I have just been put on carbamazepine for my facial pain.  Other meds used for Trigeminal neuralgia are gabapentin (Neurontin) and Lyrica.  All three of these were developed as anticonvulsants.  

Hi, Kristin!!!!!!!

To MCBCON:  What brings you to an MS Forum?  Are you aware that RLS is more common in people with MS than in the general population?  I saw your post that being able to talk about these things brought up a lot of emotions that you nmormally keep suppressed.  That's good.  So often we can't talk about the things we are going through, or don't want to talk about the over and over with family and friends.  Here we can do it to our hearts' delight.  And no matter how weird we think it is that we are saying, there is always at least one person here who is going through the same thing and has been sure they were going bonkers.

A belated welcome to our forum.  I hope you stay and tell us more of your wtory and what brings you by - to stay I hope.

Quix
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Avatar_m_tn
hey i have been looking for help for years with my legs and arms they jark all the time at night and i get so mad i take hot baths sometime it works and sometime it dosnt my legs started when i was about 12 years old im now 24  it realy got worst when i was pregant with my son i was bout 7 months and one night i could not sleep at all my legs jark so hard i kick my husben out of bed and woke him up he didnt know how to help me all he can do was hald me i started to cry cause it hurt so bad we went out for a walk and that help now just a few months later my arms started to jark and one night my legs was jarking and arms at the same time then my finger tips started to tingle my doc say its RLS she could not do any thing becouse i was pregant so now i just take hot baths before bed i sit in the tub for about 25 mins then i go to sleep it helps after i get out i meage my legs and arms right before i go to sleep and that seems to help a lot i hope i can help other with the same as me try doing what i do take hot baths and messge legs and arms before bed it could help like it dose for me thank for your storys it help me understand what i have and im not alone that has RLS
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398059_tn?1312888668
Hot baths are not an option for many with MS.  The message is wonderful if one has someone who can do this nightly.  A lot of times though the sleeplessness outweighs even that luxury.
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Avatar_m_tn
well it seems to work for me i do my own message  for me3 and my son and husben i even hear that sometimes it could be low Electrolytes Chemically, electrolytes are substances that become ions in solution and acquire the capacity to conduct electricity. Electrolytes are present in the human body, and the balance of the electrolytes in our bodies is essential for normal function of our cells and our organs.

Common electrolytes that are measured by doctors with blood testing include sodium, potassium, chloride, and bicarbonate. The functions and normal range values for these electrolytes are described below. Sodium

Sodium is the major positive ion (cation) in fluid outside of cells. The chemical notation for sodium is Na+. When combined with chloride, the resulting substance is table salt. Excess sodium (such as that obtained from dietary sources) is excreted in the urine. Sodium regulates the total amount of water in the body and the transmission of sodium into and out of individual cells also plays a role in critical body functions. Many processes in the body, especially in the brain, nervous system, and muscles, require electrical signals for communication. The movement of sodium is critical in generation of these electrical signals. Too much or too little sodium therefore can cause cells to malfunction, and extremes in the blood sodium levels (too much or too little) can be fatal.

•Increased sodium (hypernatremia) in the blood occurs whenever there is excess sodium in relation to water. There are numerous causes of hypernatremia; these may include kidney disease, too little water intake, and loss of water due to diarrhea and/or vomiting.


•A decreased concentration of sodium (hyponatremia) occurs whenever there is a relative increase in the amount of body water relative to sodium. This happens with some diseases of the liver and kidney, in patients with congestive heart failure, in burn victims, and in numerous other conditions.
A Normal blood sodium level is 135 - 145 milliEquivalents/liter (mEq/L), or in international units, 135 - 145 millimoles/liter (mmol/L).
Potassium

Potassium is the major positive ion (cation) found inside of cells. The chemical notation for potassium is K+. The proper level of potassium is essential for normal cell function. Among the many functions of potassium in the body are regulation of the heartbeat and the function of the muscles. A seriously abnormal increase in potassium (hyperkalemia) or decrease in potassium (hypokalemia) can profoundly affect the nervous system and increases the chance of irregular heartbeats (arrhythmias), which, when extreme, can be fatal.

•Increased potassium is known as hyperkalemia. Potassium is normally excreted by the kidneys, so disorders that decrease the function of the kidneys can result in hyperkalemia. Certain medications may also predispose an individual to hyperkalemia.


•Hypokalemia, or decreased potassium, can arise due to kidney diseases; excessive loss due to heavy sweating, vomiting, or diarrhea, eating disorders, certain medications, or other causes.
The normal blood potassium level is 3.5 - 5.0 milliEquivalents/liter (mEq/L), or in international units, 3.5 - 5.0 millimoles/liter (mmol/L).  thats the info i found on the net im stel looking for info about RLS and what couse it  heres the web site i found
http://www.medicinenet.com/electrolytes/article.htm

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