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sm_bs

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Hello everyone,

I am 27 years old male and new to this forum. First of all, I appreciate the way PALS are helping people who are concerned or affected with ALS, despite their daily struggle. Secondly, I found this section of the forum to discuss with my symptoms, though I am aware that nobody can detect problems over internet, nevertheless...

About 6 months months back (May end) I have developed widespread twitching but more often on right arm, right thigh, right back shoulder and left arm. I visited general practitioner and he suggested me to a neurologist. I had two thorough neurological exams which was normal except grade 1 reflexes (at knees, hamstrings and Achilles as well as in upper extremities like biceps, triceps and Bronchioradialis).

Next, an EMG/NCV was performed (right deltoid, medial gastrocnemias, vastus medialis and rectus femoris) which came out to be normal (normal insertional activity, no spontaneous activity, normal motor unit action potentials with full recruitment pattern) as well. Also had MRI which was normal. This was done in August end after 3 months of symptoms. I have been given a follow up but in April 2015.

Here is what I am writing to you for :

My twitching is still there with same intensity and frequency. My question is : does normal emg (even at very early stage) rules out LMN ALS or classic case of ALS? I have no Babinski, hoffman or brisk reflexs at the the neuro exam. Nor do I feel any spasticity in limbs (but some stiffness in lower back). Does this suffices to rule out UMN predominant ALS (even at very early stage)?

Just to mention one more thing: I had talipes (club foot) surgery during childhood. Since then my legs are a bit weaker. So if I have to walked for sometime, it starts to pain and this has been there since childhood. But now even if I walk say for 15 mins (a bit quickly) at a stretch, I feel quite a pain in both the lower legs which immediately subsides if I sit down somewhere.
Does this qualifies as weakness observed in ALS? Also I have never been athletic in my life.
 
Go read the stickies associated with this subforum. Twitching don't mean diddly.
Let your doc figure it out. If your doc suspected ALS your follow up would be a lot sooner
 
sm_bs: you can safely rule out ALS. Twitches typically come after the paralysis, when the dying nerves are trying to find a way to reattach themselves.
Widespread twitching does not indicate ALS.
With a normal neurological exam and normal EMG, you can rule out ALS.
The pain in your legs points AWAY from ALS because ALS does not cause pain.
 
Dear dalvin and Atsugi, thank you very much for your prompt responses. Appreciate your help a lot ...
 
Dear all, just a follow up question... I understand it might be irritating, but getting more anxious everyday. Is it probable that EMG can miss LMN signs early in it's course? I am asking this because I mentioned in the last post that I have issues in leg since childhood (right leg was more clubbed than left), so now I see there is a difference in muscle bulk between legs. So I don't know is it atrophy or was it always there (because I had paid attention to my body this much vigilantly in my life).

Thanks.
 
Honey you need to follow up with your doctor.

Several members have assured you this does NOT sound like ALS. Please do yourself a favour and stay away from here now, work with doctors and get to the bottom of it.

EMG shows results of things you are not even aware of yet, so yours being clean means NO ALS.

I sincerely wish you the best as you work with doctors not the internet to find the cause and get yourself back to health. Your high anxiety levels are a big indication.
 
The pain in your legs points AWAY from ALS because ALS does not cause pain.

I know this is a sticky. But i don't manage to find litterature saying that Pain = no ALS. what is your source?


Pain in ALS:
Pain in ALS: What the Research Shows | MDA/ALS Newsmagazine
quote :
"New research shows that pain is common in all stages of ALS, but that it often goes unreported and untreated."

Pain in Amyotrophic Lateral Sclerosis: A Neglected Aspect of Disease

quote :
"...features of ALS are also accompanied by a number of secondary conditions that can be just as burdensome as those symptoms directly associated with the disorder. Amongst these indirect complications related to the disease is pain. Although not generally associated with ALS, pain has been reported to occur in nearly 70% of ALS patients at some time during the course of the disease [6–8]."

Who's right then?
 
There are different types of pain, my experience is that the pain is not an 'ouch' type pain unless it comes from a fierce cramp but more of a tired/can't be bothered/ache type pain. The only truely ouch type pain is in my right knee which I had fallen on badly at the onset of the road of this disease and it/the bone just has not healed. I guess because there is no muscle left to assist in its healing.

Of course the 'mind' pain is quite something else! When you have this disease it is a daily battle to overcome the black thoughts that all consume you.
 
I got to wonder why this guy is still hanging around. He's been told that his symptoms don't sound like ALS and looking back at all his posts all he seems to want to do is argue the facts which causes other wannabes to keep asking questions after they've been answered
 
I got to wonder why this guy is still hanging around. He's been told that his symptoms don't sound like ALS and looking back at all his posts all he seems to want to do is argue the facts which causes other wannabes to keep asking questions after they've been answered



and of course this could be a different kind of 'pain' altogether :)
 
If you read the link it says the initial stages pain is really cramps which is a different thing and although they hurt I would not say I have pain Ditto with spasticity. The other pain if it comes comes later and is not relevant to DIHALS.
 
There seem to be a lot of stories from people with ALS that refer to widespread twitching as an early sign but in a lot of these forums, a lot of people dismiss that as "definitely not an early sign of ALS." I find these forums both extremely helpful at times, and then extremely confusing at others. I have had widespread twitching that has been getting progresively worse since Sept 7th. I'm terrified.
 
STYMIED:

WIDESPREAD twitching is not a sign of ALS. In ALS, twitching is localized to the affected muscle, and progresses in a serial manner as the nerves are destroyed, one-by-one.

Twitching in general is a symptom in so many conditions--including non-pathological conditions, that they are not diagnostic of ALS. They could be anything.

Widespread twitching is common in anxiety, though.
 
FRENCHFRIES

You have to read the nuanced language of the research studies very well, reading what they say and what they don't say.

People who are far along in ALS, who are already paralyzed for awhile, have various pains such as pain from swelling, joint pain from long-term immobility, and cramping pain from the muscles opposing the limp and paralyzed muscles. This is well known to people with ALS.

But people who are asking the question "Do I Have ALS?" are not fully paralyzed, so do not experience these relevant pains. Any pain you experience must be caused by something else, not ALS.

ALS does not affect the sensory nervous system which feels pain. It only affects the motor nervous system, which sends activation signals to muscles, and does not feel pain.

Pain is not a feature of ALS. It is a byproduct of paralysis, AFTER the paralysis has set it. It is not relevant to people asking the question "Do I Have ALS"?

The hallmark of beginning ALS is total failure of a muscle, with no pain, no feeling of weakness. It just doesn't work. Muscle pain points away from ALS, it can be many things.

Also, pain is part of life. It is very possible for a person to experience pain (or cramps) at the same time, but this rarely is helpful in diagnosing anything.

After all other more common possibilities are investigated and ruled out (there are many), and a "dirty" EMG shows the type of nerve damage common to ALS, an ALS-trained neurologist might diagnose ALS.

There is no contradiction between the research you quoted and the sticky. You just need to have a better understanding of ALS to be able to interpret the research words. The sticky is meant for ordinary people, not for researchers, and it is correct.

David, I believe you have already had an EMG/NCV study that showed no MND or ALS. You have a lot of sensory problems, but are you paralyzed? Are you following up with your doctors?
 
Stymied:
Please refer to this link:

Benign fasciculation syndrome - Wikipedia, the free encyclopedia

especially the diagnostics part.

It says in the absence of abnormality in EMG who are showing LMN signs (fasciculation is one of them), a diagnosis of BF is made. For the young (i.e. below 40) the widespread fasciculation only, has never went on to become ALS, however every neuro can recall a patient in their lifetime for typically men in their 50's-60's, only with widespread fasciculation at beginning which went on to become ALS in 4-5 years. But the fact is : BFS does not make people immune neither susceptible to ALS. So, in short, after reading a lot of posts and literature I concluded that if you are showing only widespread (or even local) fasciculations and have negative EMG along with clear neuro exam, then it's not ALS and highly unlikely to progress to ALS in future. I have fasciculation for 7 months (though mostly on right side, where EMG is done) and not yet developed weakness which is definitely quite assuring because from twitch to weakness (if twitch is at all the first presenting symptom) generally takes 1-4 weeks.

I have hypothyroidism along with GAD (generalised anxiety disorder), which is well known for making neuromuscular symptoms like spasm, pain and twitch. I think most people tend to ignore this aspect because I rarely see people talking about thyroid issue.
 
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