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latzable

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Hej everybody, especially Wright who seems to have a anormous knowledge here;-)
I am new here, a swiss guy, age 39, who has widespread, random fasciculations since 8 weeks now. It all began after a treatment of an infected toe with antibiotics. After that docs found a big lymphnod in my armpits which needed to be biopsied. During this pressure and fear of cancer, fasics started. I have been to the swiss ALS-clinic to do a neurological exam and an EMG, 4 weeks after the onset of fascics. They told me that there is no evidence of ALS and I do not have to come back as they have diagnosed me with BFS (benign fasciculation syndrom). My question has certainly already been discussed and discussed again. I know that people with an initial clean EMG who have been diagnosed with ALS later were people with UMN-outbreak, predominant UPM-outbreak or bulbar. The neuro at the ALS-clinic told me that they would have seen minor changes in the EMG even before the fascics showed up. I am seeking for reassurance and get doubts when I hear sayings that an EMG can be done too early. Would 4-5 weeks after the onset of fascics be enough to detect ALS in the EMG if done in all four limbs accurately? Has ever anyone heard that an EMG refering to ALS might be done too early?
Best wishes, Latzable
 

hopingforcure

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Relax, you would have had some problems with your neuro exam.. Never ever heard of someo later being DX. with ALS that had a Clean Neuro exam... This is what get's everyone worked up, if you would have a problem your neuro exam would have shown problems. Everyone listen to this it is a fact. All worriers read this over and over
 

BethU

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First, I'm no Wright and no expert in any way, except what I've read and been told by my neuros ...

My neuro told me that EMGs will detect symptoms of ALS before twitches or fasics even appear. So if you are having twitches and fasics and the EMG is extensive and comes out clean, then you are home free. You can't do it "too early." An EMG will pick up signs before symptoms even appear.

Hope this helps.
 

wright

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Latzable

I can't answer your question any better than hopingforcure and Beth have done. They are absolutely correct.

Listen and I hope everyone that is reading this is listening as well:

There are a lot of smart people on this forum but we certainly aren't going to know better than an ALS specialist. If you . . . or anyone else on here . . . is told by an ALS specialist that you don't have ALS after being thoroughly evaluated, then PLEASE believe them and get on with your life.
 

latzable

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Thanks!

Wrigth and Beth, I am your fan!
Wright were do you get all this knowledge from? are you a doctor? astonisihing....;.-)
But would the clinical show abnormalites right from the beginning, in early stages?
Isn't it possible to show up with fascics only (signs of lmn) and not have the sign of umn developped at this stage? My reflexes both were brisk, but due to the docs it was adrenaline-based...

Sunrays from Switzerland, where we usually have fog now;-)
 

latzable

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Me again

Beth, Wright

A couple of questions:
1) I have at least a thousand fasciculations a day. How come during the 3 EMG's (2 partials, 1 full) no fasciculations were detected? Seems impossible.

2) Besides random fasciculations, I frequently have fasciculations right after moving a muscle. Is this more problematic than a "random" fasciculation?

3) Is it likely that twitching can occur for six months without loss of strength and still get diagnosed with ALS?

Answer Actually it is not always surprising if the concept of EMG needle recording is understood. If the tip (or the recording pick up area) is far from fasciculating potential, then you do not see any fasciculations on the screen. For the second question, yes it is possible, and that is why a follow up EMG is usually needed. Regarding time period after onset of twitching without weakness or an abnormal EMG, it is difficult to be absolutely precise in time. But several months are usually acceptable by the time fasciculation is seen, but provided no other clinical/EMG findings.
 

latzable

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what is freaking me up...

....is that 5 days after the emg my left foot began to twitch constantly.....the sole of it still does, after 3 three weeks now, sometimes also the instep. and this seams to be strange to me. i could live with the general and more or less random fascics but these on my left foot are quite strange.....can't feel them in the sole, but see.
 

ptich

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latzable, looks like just a few weeks ago you had fear of cancer, now fear of ALS... This kind of stress is not good for your health long term.

I think you're absolutely right: cases of good EMG and later diagnosed of ALS are rare, and mostly happen with presenting UMN symptoms. So if you don't have them (dizziness, hand clumsiness, problems initiating swallowing) then you should be Ok. There is a simple and apparently very sensitive test for UMN impairments: try to tap on the keyboard with your index finger of each hand at max speed; if your dominant hand is faster than your non-dominant one by 0 - 10%, your UMN are fine.
 

latzable

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great idea.....and it works;-)
 

latzable

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hopingforcure...

...thanks......i am your fan also.....didn't realise it was you answering...!;-)
 

rose

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Pitch....

I have not heard of the little test for UMN and tapping of the index fingers anywhere before, have not read it, nor been asked to demonstrate it by a doctor. But I tried it just now (woke up the cat who was laying partially on the keyboard in the process) I absolutely cannot tap my index finger of dominant hand faster than the other, if anything it is a tad slower. So, don't know how scientific this is, but it was interesting. - and no, I cannot tap very fast with either, and yes, I do have UMN involvement.

My neuro always has me do the touch fingers to thumb one at a time as fast as I can, but does not have me do just one finger of both hands at the same time.

I am not endorsing this as valid "self test at home" but it was interesting.
 

wright

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Ptich is absolutely correct about that test: it is used by neuro's as well as a toe-tap test. Those tests certainly need to be coupled with other clinical exams but they are good ways to measure progression in a very easy manner.

Having said that, there are many things (e.g. arthritis) that can cause a slowing during "tap tests" so please don't everyone start to panic if they find a slowing in a limb. I have a slowing in my right hand (it will fluctuate during the day depending on pain levels) but it is due to my peripheral neuropathy and the transient stiffness and pain it is causing in my hand and fingers.
 

latzable

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wright, what do you...

*removed*
 
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