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jennibf

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As everyone knows my neurologist is sending me to a teaching hospital (UAB) with an ALS/EMG/NCV specialist but because the appointment is with the guy in charge of the department it isn't until December 23rd.

Baclofen has been helping a lot with the muscle cramps and I'm learning to pace myself. I have also been doing one of my absolute favorite things-decorating for Christmas and spending time with my kids and my nieces, nephews, parents, etc. and just trying very hard to distract myself.

But last night was the scariest night, not to mention the strangest. I was awakened not by a muscle cramp but by "jumping" over and over and along with the jumping was something that felt just like a shock, an electric type shock. These moved all over my body and one even made me cry. This lasted for several hours. I would drift back to sleep and another would happen and in between these were little ones.

Could this be a side effect of baclofen? WHY AM I SO WEIRD?

Any ideas?
 
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awieleba

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HI

never had a shock like thing but I do get the jumping. I "think" it is myclonus? I use to get it alot more, I still do. Mainly while in bed my muscle's jerk. It can be the whole limb like my arm or leg. Latley it is a muscle, in a strange spot that will tighten and release, it is not painful. It is mainly when I relax that it happens. iI f I keep busy then it does not.

Take care. and I am with you on christmas! I am thinking of bringing it all out this weekend. I never have done it before thanksgiving but I need to keep busy as well....
 

Zaphoon

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Jenni,

I'm all for the easiest resolution possible - blame it on the baclofen but by all means, let your doctor know about this if you haven't already. You could be having some kind of a reaction to the drug and the doctor that prescribed it needs to know, just in case.

But, then again, your wiring may be on the fritz, too! :)

Could be serious (but you are not allowed to panic).

Could be something minor (some bad pasta?).

Yep, you're weird!:mrgreen:

Zaphoon
 
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planningguy

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Hang in there. Most of us know the tension of waiting for the next appt., and how it can fray the nerves a bit. Hopefully the holiday season will prove to be a welcome distraction.

I haven't had big jumps of a whole limb, but the muscles/tendons in my left forearm will occasionally "pop" causing my fingers to twitch. Hasn't happened in a while.

Best of luck,

Robert
 

jennibf

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You all never fail to calm me, humor me and make me smile!

Thanks to all of you!

jennifer
 

rose

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Jennifer,

I don't think that this is even a rare side effect of the baclofen, just seems it would be completely reverse effects, but if you read the small print on the drug information sheet that came with it, or talk to your pharmacist, it would say (even if its only been documented as an effect to a very few people- like some sleep preparations keep a few people awake).

I think it sounds like myoclonus, and did "surf" around a little bit and found this: This particular article mentioned the brainstem, but of course there are several variations of myoclonus and its causes....

Reticular reflex myoclonus is thought to be a type of generalized epilepsy that originates in the brainstem, the part of the brain that connects to the spinal cord and controls vital functions such as breathing and heartbeat. Myoclonic jerks usually affect the whole body, with muscles on both sides of the body affected simultaneously. In some people, myoclonic jerks occur in only a part of the body, such as the legs, with all the muscles in that part being involved in each jerk. Reticular reflex myoclonus can be triggered by either a voluntary movement or an external stimulus.

I hope this is just an upsetting thing, rather than an indicator of something to cause you more worry, which is why I searched around a little first before posting. I didn't find anything much though, just articles talking about various conditions where this is a feature or symptom.

I wonder if it is significant because you were sleeping when it started, i.e. a stage of sleep your brain was in. This is something that can be monitored, so maybe it will give your doctor some insight when you go for the appointment.

It is hard to not have classic symptoms of anything. At least here on the forum, you've got company of many that either remain undiagnosed, or took the long route in getting a diagnosis. Hopefully you will get some of those answers with your next appointment, and maybe even this latest development will be of significant importance to help steer them in the right direction.

Good luck to you sweetie! :) answers are coming!
 

Zaphoon

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Jenni,

Reading over Rose's post, it struck me! You can be the classic "a-classic" example for all of us jerks and twitchers here, yet to be diagnosed (or in my case, going for another round).

We could even pin a nick-name on you, like "The Jerk", thereby making the rest of us relegated to mere jerks who only pale in comparison.

Zaphoon

P.S.
Please get this jerking, electrical thing checked out as soon as possible by a competent Dr. of something. We fellow jerks worry about you.
 
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jennibf

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THANK YOU SO MUCH, ROSE! Your heart is gold! I only had a few minutes to do research yesterday (had to take the kids shoe shopping and a six year old who needed help w/ school work) and I couldn't think of what to google. Before I read Aweilaba's post about myoclonus I was doing searches on things like "shocking jolt from sleep" "electric shock" and of course was getting things like "electric shock therapy" LOL.....which might not be such a bad idea after all of this.

It didn't happen last night, or at least I didn't feel it thankfully. I was afraid to go to sleep. I will call my doctor and see if I can get in earlier at UAB.

Kim, LOL! I would rather be called beef jerky or jerker than the jerk, lol! I was thinking that it could be a side effect from some shrimp bisque I ate the other night? ;)

hugs and love to you all!
jennifer
 

rose

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Jennifer, When I went to bed last night I was thinking it was probably going to be hard for you to go to sleep now. Kind of like a night terror, and not knowing whether to expect one again. I really think it will be an important marker for your doctors though. I hope you can get your appointment moved forward...... :arrow: smiley hugs! ((((((:)smile:))))))))
 

awieleba

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Z~

LOL, that is sooo funny! The Jerk! I love it!

PS. Rose, you really do have a heart of gold!

oh and good luck Jen
 

jennibf

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No earlier appointment than December 23rd. Guess I just have to be patient. I went w/ my husband today for his follow up on his disc surgery and his neurosurgeon (who has also become our friend and was the one who got me in w/ the local neurologist) spent more time talking to me about my stuff. He said "Surely Dr. Potts speculated" and I told him about the muscle disease and the PLS and he winced and said maybe it's better we don't know for sure. hahaha....We talked about how sweet dr. potts is and he said that he is a very smart doctor. He wants me to call him after I go to UAB. Everyone has been so incredibly kind to us. I know we are very lucky.

I keep thinking that whatever I have is transient. I go to bed each night with the belief that whatever this is will be gone by the morning :) and I eat an apple a day (or a slice of apple pie).

I love the hope of that and after all, hope springs eternal.......
 

olly

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jennifer

i have had myoclonus for some years now.
the electric shock like contractions you have sound like myoclonus but they dont go on for hours,they are brief but can be more frequent sometimes.
myoclonic epilepsy effects the whole body but general myoclonus can be a limb or several.
in the begining the myoclonus effected my left side more,now it has stayed in my right side.
my arm will shoot out,my right side of the torso will jerk to the left and i have focal reflex clonus in the right lower leg that causes it bto shoot up in the air(this is not good news when your standing)
baclofen does not cause myoclonus,in fact i feel it helps.
baclofen side effects tend to be drowsiness and long term use weakness,but the spasms cause weakness so you can not win there.
hope this helps more:)
 

BethU

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Caroline ... I have read your posts on myoclonus and found them very informative, but thought they didn't apply to me. Now, for three nights in a row, I've been wakened up with my body going crazy. My right leg keeps kicking out violently. My arms are going back and forth across my chest like I'm trying to hug someone, but it's a very violent motion. I can't remember if my left leg was busy ... but the actions are very jolting and strong. If felt like my body was jumping, too. It didn't last long ... maybe a minute? ... and I fell back asleep immediately.

That happened to me once a couple months ago, too.

It is interesting that you mention this as a form of epilepsy, as I had an intense hallucination a few weeks ago, as well as bouts of euphoria since last December. When I Googled trying to find out about this stuff I came up with temporal lobe epilepsy for both the hallucination (A perfect description.) and the euphoria. The euphoria could also be FTD ...

I go for my clinic visit to UCLA next week, and I'm going to list all this stuff ... the myoclonis I don't like at all ! (I'll take all the euphoria I can get.)
 
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