Fear ALS a lot

Heerlen24

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Joined
May 3, 2024
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Learn about ALS
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NL
Hello
Ik have read many many times: READ BEFORE POST. It helped me, sometimes

In short:
2017 felt vibration, popcorn in my calves for first time, but not every day
2018-2023 hardly noticed the popcorn-feeling.
2023 i felt them more times, in calves and upperlegs, but not dayly. Didnt see them also (but never watched).
march 2024 i watched the calves and got scared because i saw them. After that only focused on the fear, cant function almost (privately, work)

Diagnostics:
-NCS 2018, 2023, 2024: changed from slight abnormal till normal in 2024.
-No needle EMG so far
-MRI brachial plexus: slight thickening (conclusion: might be very light CIDP)
-april 26th ALS specialist Holland, after neurological examination: only normal light jawjerk reflex. The rest was normal: normal strength, no hyperreflexia. Conclusion: no clinical signs of ALS
-June 25th i get a needle EMG (because i am so worried)

Would all of you be worried like me? (yes i know i read about ALS is failure, not feeling). Can the fasciculations still be a precursor of ALS? (1 month witnessed them, maybe felt them at least one year ago without looking at it). No weakness (speedcycling, tennis, walking, daily activities). Do eventually weakness appear in the fasciculations-area? ( and then you would say....bilateral fasciculations are benigne because most failure start on one limb). Is there a time after it is defenitly no ALS after fasc's start?
And in case the conclusion is CIAP/CIDP/SNP, can it show fasciculations? Thanks!
And all take care!
 
The only symptoms are twitching and vibration? Why did you have the MRI? And who is throwing around diagnoses like CIDP. Was it just on the radiology report and said so,ething like needs clinical correlation which you don’t seem to have ?

7 years of twitching without weakness and an ALS specialist telling you no signs on exam should be enough to say benign assuming a benign emg
 
Hello, thanks for replying.
In 2018 because of loss of sensibilty in feet the suspicion was a polyneuropathy. They couldnt find a cause for the reason why the sensible symptoms occured (there was no B12 deficiency, no diabeters and so on...)
A reason for neuropathy could also be an inflammatory process. To investigate that, they did the MRI of te shoulder(brachial nerve). That showed a slightly point toward inflammatory neuropathy, but no 100%).
So sensory symptoms since 2018, and around that period also the feeling of popcorn, from a few days till months without that feeling. And since last winter more complaints till i first wachted the popcorn-feeling in march this year and since then i feel it daily and see it also)
 
Since a few days really strong fibrillations around my right scapula on the side. Worries me more. And here in the threads: no weakness is no ALS. I hope is true, because i know 20% of people with ALS start with fasciculations.
1) should i fear ALS (after clinical examn was normal, but at that time te fasciculations were less)
2) is local fasciculation more suspect then widespread?
3) after a year of fasciculations in the calves without weakness and now the fasciculations also appear in other muscles in the body, should i count again from day zero (because fasc without weakness after a year is a good sign). But now behind the shoulder, must i still wait for a certain time that is is benign?
Thanky for taking the time to read. So thankful....
 
1 no
2 not without weakness
3no

What is your source for that 20% statement? I do not believe 20% start with twitches alone. Twitching and weakness sure
 
I will come back on the % (it is wat my neuro told, an ALS-specialist).
So when i twitch in my calves for a year and since days-weeks on different spots (but mainly strong twichtes in the back of the shoulder) i am still a one-year twitcher and not a one year calve-twitcher and a week shoulder-twitcher.
Thanks!!
 
I had EMG which was clean today. They didnt test the tongue or neck, but neuro sais without speach/swallowproblem there is no need to worry. Only i have a scratchy voice but that had nothing to do with bulbar symptoms i heard.
Still neuro didnt give a certain answer on the ethiology of the twitches, but clean clinical and clear EMG is what neuro was interested in,
 
Rightfully so. Congrats and live your life. You could try a nasal steroid empirically for the scratchy voice.
 
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