Fasciculations and UMN control

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ptich

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One thing that was puzzling me all this time is that I never had fasciculations during neuro visits (6 of them total over 2 year period), while I do have, and see, fasciculations at other times. I feel fasciculations in the lower part of my legs approximately 30% of the total time when I am awake, and sometimes in other parts of the body. But never during a dr's visit. Why ?

Now I think I know why. I noticed that I never have them when I am "mobilized" - during dr's visits, meetings at work, etc. I do have them only when I am relaxed, and my brain is less engaged and alert. I may use wrong words (English is my SL), but I hope you get the idea.

IMHO, this clearly indicates that my fasciculations are of UMN origin, not LMN as routinely assumed about any fasciculations. Wouldn't it be an interesting finding for somebody studing neuro-muscular mechanisms ? Assuming they ever bother to visit forums like these...
 

Blizna

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Fasciculations cant be UMN origin. UMN is in your brain, while LMN is the nerve-entering area in the spinal cord and that is the place where fasciculations have origin - anterior horn cells.

If you have twitching for such a long time, why are you still concerned about ALS? Do you have weakness /atrophy?

PS: I have emailed the famous doctor Memede de Carvalho, the one who is specialized in fasciculations and its the one who published the study about patients who had twitching and later ALS.
He replied to me he had only ONE case where 75year old man had fasciculations before weakness and EMG abnormalities developed for 1 year.
 

ptich

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> He replied to me he had only ONE case where 75year old
> man had fasciculations before weakness and EMG
> abnormalities developed for 1 year.

Do you mean he had fasciculations first, then weakness, and after 1 year - bad EMG ? I thought fasciculations-only presentation is more common. Read "quadbliss" website - his fasics started 2 years prior to any weakness. He has a slow progressing case, though.
 

Blizna

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Yes, he agreed fasciculations can be first symptom ban EMG wont be clean if its really due to ALS.
And he said only one case had clean EMG, fasciculations and 1 year later weakness appeared and EMG abnormalities developed. He also said this subject had abundant fasciculations.
About Mike (quadbliss), I have read his story, to be accurate it was 1 and 3/4 year from his twitching to noticeable weakness. But he has not EMG done at first and I highly doubt it would be clean. quadbliss is really brave and inspirating person
 

CindyM

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My local neuro noticed fasciculations and discovered weakness - I thought I was jsut out of shape and never noticed th twitches. So he sent me off to the ALS clinic. They saw the fasciculations and found htem on EMG's but I still do not have ALS. Who-hoo!
 

olly

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why are people so obsessed with fasic,s/twitching?
they do not mean a thing if theres no weakness,NOTHING,NIL,CAPUTT.
my son has twitching in his legs but he has kidney damage and curviture of the spine,he does not have als.
people WITH ALS DONOT OBSESS OVER FASICS, they are too concerned about WEAKNESS and LOSS OF INDEPENDENCE.:x
 

hopingforcure

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AMEN, I agree, if you truley hav MND.. the twitching and such will become the least of your worries. I think people have gone MAD with the fasiculation worry. It dont mean a thing if aint got that weakness..
 

vmd

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I think it is because fasciculations are part of the ALS picture and they can be perceived by others objectively. Weakness, on the other hand, can be subjective. Atrophy can also be very subjective, at least when it is subtle. I have read that there are differences between malignant fasciculations and benign fasciculations, while another source states that it is a fallacy to think that one can detect these differences. Rather, this authority states that fasciculations become malignant "by the company they keep." In the BFS boards I find that they spend much time exploring the clinical differences between malignant and benign fasciculations. What do the rest of you think. Do you think Dr. Carvhalo could determine the type of fasciculation simply by its characteristics (i.e., frequency, focalization, contraction fasciculations etc.)?
 

olly

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sorry blizna but i have to correct you.
you can have twitching in pls,many have this and that is a fact!
probably caused from nerve or muscle irritation from umn symptoms/involvement.
dont state facts unless you know them to be 100% true.
sorry,got 4hrs sleep last night so i am a bit grumpy today:-(
 

chris_uk

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sorry am confused by all this ! my Neuro told me that my twitching could be caused by nerve irriatation, so can this be from UMN symptoms? and what exactly are UMN symptoms?

Chris
 

judylyne

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the first physical symptoms my husband had were fasiculations. from the time they developed to the time he died was one year. when he died he was totally paralized. He no longer had any twitching. The doctor said he could tell by the EMG that he had the disease for at least 2 years before the twiching started.
 

hopingforcure

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Olly is correct, fasiculations are imporant with the company they keep. I have seen many pls'ers have twitching, it is my unprofessional opinion that twitching can come from muscle and nerve irritation. I also want to reiterate that subjective atrophy and weakness, are very very more than likely NOT to be ALS. A good ALS neuro can tell clinical weakness and atrophy. Trust me if you have ALS weakness you will not have to think if it is subjective. You must remember that a neuro will be able to tell a lot with your exam. I think a good neuro will already have a good idea if MND is the culprit, even before an emg. If you guys are still relativiely strong, and such, stop worrying....
 

tmasters

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Regarding vmd's question of is there a difference between fasciculations from BFS vs ALS (okay I changed the question a little) I have to think the answer is NO, there is no consistent measureable difference. If there was, it would go a long way toward making an ALS diagnosis much easier. And since the neurologists only casually look at the fasciculations there must not be much they can tell from them.

-Tom
 

vmd

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Tom:

It seems the neurologist I cited would agree with you. In my case I am able to detect differences between at least 2 types of fasciculations. The one I have in my right calf is different in frequency, latency, and constancy when compared to the ones I experience in other parts of my body.

You state you had leg onset. Did you first notice fasciculations in your symptomatic leg or in other spots? Did you experience the fasciculations before the weakness or vice versa? Thanks, especially if you have answered these questions before. In the BFS boards, they seem to think that weakness preceding fasciculations in ALS is an established rule. Yet, we know there are many here with ALS who experienced fasciculations first.
 
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