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delorme

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Hi all,

I have read many threads about ALS on this forum and finally have decided to post mine. I am 33 years old and 3 weeks ago I have had a virus based enteritis with mild fevers lasting for 4 days. After I have recovered from it, I started to feel strange weakness in my left leg. When I searched internet for my symptoms, I was absolutely scared with the results. Anyway, I went to my GP who sent me to neurologist. She has performed standard examination (walking, reflexes, etc)- which resulted fine - I was also able to walk on my toes and heels. Anyway, now after a week after my visit to neuro, I start to see twitching on my lower limbs, also paeticulalrly on my left leg - couple muscle are twitching like every 5 minutes for 1 second. It has completely scared me as now my leg feels as if it would be compressed with an iron glove. On one of the threads here it was explained that twitching together with weakness in legs is "definitive" sign of early ALS. After reading this I really started to be very anxious - i have 3 small kids - and my brain started desperately looking for other symptoms before the enteritis. I remember that approx 4 months ago I have noticed several times a strange feeling on my left leg after I woke up in the morning - something like someone would hold your ankle. I don't rwmember about the twitching, it migjt have been there and i just did not pay attention to it. Holding feeling has disappeaered during the day or at least it wasn't noticable. Can this be a sign for ALS? My neuro has sent me to EMG which will happen in 2 weeks time. Until then I have to fight anxiety.

Thanks.
 
Please point me to the post that says twitching and weakness in legs is a definitive sign. That is just plain wrong!
Reading what you wrote I was thinking of a post viral syndrome. You could very well have some dehydration and or electrolyte imbalance from your illness that is causing this. Keep well hydrated and make sure you have good dietary intake of potassium ( unless you have a medical contraindication to high potassium foods)
Your EMG will tell you more but I would not worry in the interim
 
Hi Nikki,

Really thanks for a quick reply. Here is the thread https://www.alsforums.com/forum/do-i-have-als-als/19094-bfs-als-must-read-if-you-twitch.html.

I am kind of an anxious personality, i am taking magnesium for 2 dyas now but no potassium yet. I have never had such feelings before and it is really stressfull for me:( i was dehydrated 2 weeks ago and was taking infusions for rehydration in hospital. I didn't eat properly for more than 7 days in the past 2 weeks and also lost weight. Yesterday i was twitching all over my body in the evening but today predominantly on my left leg,.. I also remember some twitches when my whole body moved - just like before you fell asleep. But i have had these also couple of years ago as well.

Anyway, i have to stay optimistic although it's very hard.
 
It does not say that anywhere that I saw. Yes in ALS one may have weakness and twitches from the dying muscle. One can also have weakness and twitching from a number of other causes. But you don't have weakness anyway!
But to say all leg weakness with twitches is ALS is like saying all headaches are brain tumors!
 
"On one of the threads here it was explained that twitching together with weakness in legs is "definitive" sign of early ALS."

I agree with what Nikki said and remember, there is no easy "definitive" test for ALS. If it were as easy as finding twitching and weakness to be definitive, we wouldn't need all the EMGs, MRIs and blood tests that we have to go through. And it wouldn't take months or years to get a diagnosis.
 
I know everything that needs to be said has been said on this thread, but I just can't help but respond. "Twitching and weakness"? "Definitive sign"? Hogwash x 2.

Even if it were a clinical person making that statement, I would chalk up the apparent ignorance to poor writing skills.

Twitches just don't mean shit in the diagnostic stage.

"Weakness" would be significant (but still not definitive) if it meant "a muscle limp and useless due to lacking a signal from the motor neurons." But that's not what most people mean when they say "weakness."

As Nikki said--and she knows better than anyone--sometimes muscles twitch just before they "die." But in the vast majority of cases--99.99999%, at least--twitching has nothing to do with muscle death, and nothing to do with ALS.

Dusty summed it up well, too. No easy test. Indeed, no definitive test. Maybe someday.

DELORME:

Specifically, your symptoms of "feel strange weakness" and "leg feels as if it would be compressed with an iron glove" is not at all how ALS "feels." And "Holding feeling has disappeaered during the day" would never happen in ALS. Of course, "twitching all over my body" is a sign of many little problems and non-problems, but it isn't ALS. Remember that your "standard examination...resulted fine." This is an important sign that you DON'T have paralysis.

Personally, I don't see any reason for you to have an EMG, but I'm not a doctor. Then again, many doctors don't understand ALS at all, either.

Good luck, be optimistic. Really, I see no reason to be worried.
 
Atsugi/Nikki/Dusty,

I am absolutely grateful for your answers! I really appreciate!

I admit that my downside is that I am a very analytical person (it's not a good thing believe me) and I tend to dig into topics until screws and bolts. That spiral of facts and constant self-monitoring leads my brain to find ALS symptoms where there are perhaps none,.. and place my previous and current weird feelings into the pattern of this desease.

@Atsugi
I don't have paralysis that is true. I think my neurologist have sent me to EMG because she could not find any visible manifestations of motor neuron desease just my subjective description of those feelings in my legs - especially left leg.

@Nikki/Dusty7
OK, I've got it. From all threads I have read here so far, people were saying that they have fasciculations and that they have progressed from the limb of first appereance up to the body and other non-impacted limbs. Is there a statistical time available of how long and how intemsive these fasciculations are from the first appereance on an affected limb? From what I have read, many people first noticed paralysis itself and not the fasciculations - they either did not attract attention or were left unnoticed. Can this really be like that - like unnoticable twithcing and then boom paralysis?

Thank you guys again. You are very brave people and I can't even express how I admire your dedication and care of this forum.

Delorme.
 
You are putting the cart before the horse here. Generally there is weakness ( not total paralysis of the limb but failure of one or more muscles leading to clinical weakness and some noticeable failure to perform some task. Twitching is later. There supposedly are some PALS whose twitching preceded weakness but generally not by much time and or clinical weakness is detected in a clinical exam that they did not notice. There have been reports that people with the gene mutation sod1 may twitch first for a longer period. People with sod1 generally have a long tragic family history as sod1 strikes mostly by mid40s
 
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Hi Nikki,

thanks for the reply. Currently in my country we have a case where a soccer player has got ALS (diagnosed last year in May - in April last year he was still playing!) and after 1 year he looks really bad:( He is almost completely paralyzed by now - just after 12 months. This disease has surely variable progression from person to person.

Anyway, my left leg feels weaker and weaker:(( When I try to stand on my heel and toes, I am starting to feel pain in the calf muscle - I also noticed the my leg is kind of buzzing and giving up strength:((( I am starting to be really scary,... Also my whole body seems to getting slower and I am really feeling as if I would get cramps on my left calf any minute - something like strange tension. I also still see fasciculations on my left leg.


Guys, I am completely freaked out and starting to think about my family, future, etc. I am really desperate.
 
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My advice, while you're waiting for your EMG, is to examine your muscles one by one. Is a finger muscles useless? Is a toe useless? If you don't have any limp muscles, you can relax.
 
When I first went to doctor I'd been having leg cramps and twitches for over six months. I went because of the atrophy in my hand and trouble doing buttons and zippers. Now 625 days since diagnosis, I still have twitches. The are a sign of muscle life.

When you read about symptoms you start thinking I have that. ALS progresses differently in everyone. Mine starting my legs but made more impact in my hands at first. I can still write but can't be understood when speaking, can't walk but can still wiggle my toes on my right foot.
 
Thanks for all of your replies guys. I have checked my muscles and it seems I don't have any limps. I can move all of them - if I tested them correctly. Also I don't want to sound like a paranoid - but I have noticed twitching in my tongue and I have a strange feeling on its sides, front and lower lips. I am able to move it from side to side, but that strange feeling stays. Can this be also sign of this desease so quickly? I really don't want to exxagerate here, but that is what I feel right now as well. My wife is already starting to get quite stressed which I don't want,..
 
DELORME: You have nothing to stress about, except stress itself. You really don't have ALS, and you're not showing any signs of beginning ALS, either.

But this health anxiety seems to be affecting your happiness and your wife's happiness, too. If you can't wait for the EMG, see your PCP and request something to calm yourself down.

Anyway, since you don't have ALS, you really don't belong here. We like to help people who might have ALS, but since you don't, you should move along and seek assistance for your anxiety elsewhere. Good luck.
 
Hi Atsugi,

thank you for putting it straight.

I apologize if I offended anybody here - it was unintentional. I know that I just panic because of health anxiety:( I guess I will stay away this site for a while because the more I read it, it adds punches to my psyche at this very moment.
 
Hi all,

after a while I am back with some updates and less anxiety:)

I went through some examinations - EEG is OK, BAEP (brainstem auditory potentials) is OK as well. The neurologist doing the EMG's decided to do only NCS for now - they have found problems with my nerves on my right leg (tibial) and both hands (don't remember the nerve names but are related to pinkie fingers). So my neurologist has sent me to brain MRI with contrast and spine MRI - they are scheduled in 2 weeks from now. However, my problems still persist - i can see fair intermittent fasciculations in my both calves and I also noticed twitching on my foot. During the day I am twitching elsewhere on my body - arms, biceps, abdomen - fires couple of times and it's gone. Also strange slightly striking pain along my legs from my knee downwards and my calves are aching much for like 2 seconds when I stretch them - like I would get a cramp but it stops right before it would start cramping. Especially after some small exercise my calves twitch like piano.

I admit that I am watching myself very much around this time but what I wanted to ask is that when I contract my biceps and let it release, it releases itself with a few "jumps" and then my muscle feels very tired. It just shakes a 3-4 times and only then rests - almost like shakes itself off into rest position. Can this be fasciculation? I also have read that with ALS one can detect fibrillations - I could not find anything about that here - does anyone know what it is and how it manifests?

Thanks in advance.
 
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