scratching my "jerks" away

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color

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Hello,
I occasionally have random "jerks" all over my body (feels like electrical pulses/jolts, in a sense) and am wondering if these would indeed qualify as fasciculations? I'm waiting for my EMG results -- would they capture these in any sort of way? Anyway, when these do happen, I just kinda' scratch them away so as to avert any stares I may have gotten from the outside world...Does this sound familiar to anyone else re: MND? Additionally, these "jerks" are happening more and more frequently, and I'm wondering if a muscle relaxant (Baclofen, Zanaflex, Neurontin) would help?
As I mentioned in my hello post, I'm currently in-between diagnoses and am reaching for any ah-ha's whatsoever, that may help in even the slightest bit.
Thanks so much,
Color
 

olly

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hi color

it sounds like myoclonus,in relation to mnd it is a umn symptom.
i get myoclonus,a limb will twitch or my torso(usually the right side),lately it is my right shoulder area.
very rarely it effects my whole body,like having a huge electric shock.
i don't think it would show up on emg,umn symptoms dont.
baclofen does help,i have been on this for some years now.
the myoclonus is not as severe as it used to be after being on baclofen for a long time.
i hope this helps.
take good care.
caroline:-D
 

color

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Yes, Caroline -- this definitely helps, thanks! :) So I can erase the word "fasciculations"entirely in this instance, right?! I hope so -- as I understand, fasciculations are visible, whereas myoclonic jerks are not (just the aftermath). Is that correct, do you know?

Thanks so much for your explanation -- I go to my regular neurologist on Friday and I'd like to be as informed in advance re: terminology as I can...

Take care,
Color
 

olly

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myoclonic jerks are not the same as fasic's,they are more like clonus so would may be caused by hyperactivity of the reflex's .
myoclonus is totally visible,usually at rest and i describe it as the area involved is trying to relax and settle but there is still a spark of activity going on,so a myoclonic jerk is the body releasing the excess energy.
do you have clonus,hyperative reflexes ,muscle spasms or spasticity?
these usually accompany myoclonus.
i hope your appointment on friday goes well.
take good care.
caroline:-D
 

color

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Hi Caroline,
Thanks so much for inquiring -- I definitely have familial hyperreflexia and spasticity. And that is why we've been given the "Spinocerebellar Ataxia, type unknown" diagnosed. The word "clonus" hasn't come up as of yet in my exams (over the past 3 years), but now I think that it most likely will...You see, the most recent specialist I've seen is honing in on the hyperreflexia and spasticity part, and he is questioning the validity of the SCA diagnosed, feeling that it is more likely a MND/movement disorder with cerebellar atrophy.
Is clonus of a progressive nature, and perhaps that explains its absence in my examination findings of the past? Also re: visibility -- as I mentioned before, my MJs (myoclonic jerks) aren't isolated to just one area of my body -- I get them sporatically, and all over (sometimes in the leg, sometimes in the arm, sometimes in the neck, sometimes in the foot, etc.). Neither I nor my husband can actually "see" them. What do they look like?
This is very, very interesting and noteworthy -- I greatly, greatly appreciate your sharing and knowledge!

Take care,
Christina

P.S. Your description re: the body releasing excess energy is PERFECT! That's exactly how I would describe them, too. And now, taking it one step further and thinking out of the box, perhaps it explains the KCNC3 gene variant that was identified?
 

color

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Timing

Oh, and another thing I forgot to mention -- they seem to occur when I am resting/relaxing/falling asleep, thus adding to my sleeping problems...Grrrr! :shock:

Take care,
C.
 

olly

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hi christina

clonus usually accompanies spasticity,it is not progressive and can come and go.
here is a test for clonus...........if you are seated and you lift just your heal off the floor your leg will start shaking,this may be slight or severe depending on the severity of the clonus/spacticity/hyper reflexes at the time.
myoclonus you can see as physical jerks of area's of the body,this is usually at rest but once i had just sat down on the settee and in a second it was like i had been picked up and thrown back by some invisible force,it is rare i get them that violent.
if you are feeling something you can not see i am not too sure what it is,it could be a vibrating sensation alot of people get with umn involvement.
now about your diagnosed..............i failed all the ataxia tests,but with umn desease inco-ordination is a symptom so it is not the same as in progressive ataxia desease.
i too had a possibility of cerebeller atrophy,but after some years of mri's there was no visible change and after ruling everything out i got a diagnosed of mnd in nov 07.
i have mainly umn symptoms with slight lmn,i think it is pls but with the slight lmn involvement it is confusing things.
ask about pls being a possible diagnosed at your next appointment,it does sound like it could be.
how were your mri's? if they are ok and everything else has been ruled out then pls/mnd is possible.
it is a pleasure to help,keep us updated.
take good care.
caroline:-D
ps .what is the gene variant they found?
i had genetic tests,as far as i know they were ok
 
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color

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Hi Caroline,
When I tested for SCA-13 a few months ago, a variant "of unknown clinical significance" was identified on the KCNC3 gene (potassium voltage channel)...The only way to research this further, I've been told, is to have my affected brother tested, and if he too has the variant, then maybe it means something. Otherwise, it's just a fluke, I guess. (Ironically enough, though, all roads lead to neurodegeneration of some sort, as per Google...) Oh, and FYI -- the two families that have been given the SCA-13 tag had MISSENSE MUTATIONS of the same gene. One family (Filipino, I think) had juvenile onset, with mental retardation; the other family (French, I think), had adult onset, with progressive ataxia only. The two commonalities seem to be the affected gene and ataxia of some sort, nothing else...
Anyway, getting back to myoclonic jerks -- I tried the heel test, and yes. There's shaking. Darn. I'll definitely mention this on Friday. But hopefully, regardless of the actual science it is and being able to see it, I hope that he prescribes Baclofen. I really want to reap from its sleeping aid quality as it relaxes my muscles.
Re: MRI -- my brain MRI of 2005 captured 'mild to moderate cerebellar atrophy,' and that is what's throwing things off re: DX...Does any kind of MND have cerebellar atrophy as a symptom? I haven't been able to find anything, as of yet. And another question is re: heredity -- once again, does any kind of MND have heredity involved?
Thanks so much,
Christina
 

olly

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hi christina

i have been doing a search for you and have found some info.
theres too much to post,if you go on google and type in ..........cerebeller atrophy and mnd.
there is alot of info saying that cerebeller atrophy can be complicated with mnd
also that in mnd there can be some cerebeller atrophy.
so it looks like there is a connection.
you will find your thread there as well lol,i have found some of mine on google before.
well,they do say everyone is famous for 15 minutes.
i hope it helps a bit.
take good care.
caroline:-D
 

color

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Thanks so much, Caroline! So I'm famous, whodathunk?! I'm sure that there were hoardes and hoardes of "cerebellar atrophy and mnd" stalkers out there, during my 15 minutes' worth?! How many people had it on their top 10 to-do list at that very moment, do you think?! Millions? Billions? Zillions? Kabillions?! ;)
Actually, my neurologist called me today to let me know that my EMG results are negative, for the most part -- and so I can rest re: classic MNDs. According to him, the next step for me, since I've exhausted all of the knowns that are commercially available, is to get a linkage analysis done. This involves getting blood from some affected and some unaffected family members for them to study, yada, yada, yada...It's a HUGE project, and fortunately the NIH (National Institutes of Health) has the funds to do it. Now, if only I can get my bear aunts to consent...:|

Take care,
Christina


P.S. Oh, and in case you're really into this genetics stuff -- correction on the SCA-13 info that I previously wrote: it was the French family with the juvenile-onset and mental retardation and the Filipino family with adult-onset and progressive ataxia. And even though it was the same gene that mutated (KCNC3), the mode of firing was different -- for the French family, the channels opened earlier than normal and closed too late; and for the Filipino family, it completely prevented the potassium channel from functioning at all. Crazy stuff, huh?!
 

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sounds like you are in good hands! at least when your test results are 'normal' so to speak they dont tell you to take to anxiety pill and go home!

april
 

olly

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hi christina

be prepared for the fact that they may not find "the link".
i was told anything genetic can miss generations or start as sporadic in one family member.
there is a women who lives on a road next to mine,there is no history of neurological illness known in the family on her mum and dads side.
her sister has been diagnosed'ed with ms and she has neurofibromatosis.
she has the neurofibromatosis gene but no one else in the family,so sadly she can not have children.
i had genetic testing done,even though they were ok it is never 100% definate as there are some that they donot have tests for.
in mnd you can have a hereditory form but the genetic test may come back negative.
i hope they can find out more with your genetic tests and give you a definate diagnosed.
take good care.
caroline:-D
 

color

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A big thanks to Caroline for all the info, and another one to April for chiming in! Yes, I know that this may well amount up to NOTHING -- I've been chasing rainbows for many years now...Playing the game of process of elimination is such fun, isn't it?! I see it like Scrabble or Battleship.

Anyway, I greatly appreciate your responses, and even though my case is a big question mark, I'd still like to check in on this forum once in awhile and lurk a bit, alright? :cool:

Take care,
Christina
 
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