Classic Lower Motor Neuron Signs / Early ALS?

[elelegido]

I am a 43 year old male. Five months ago body - wide fasciculations started. The would mainly be in my biceps and calfs but would happen in almost every part of my body - soles of the feet, abdomen, back, lips, eyelids, arms, fingers etc. I still have fasciculations, and since they started I have also started to have other symptoms such as:

Progressive muscle weakness - started in the arms and shoulders and now has spread to my legs. Even very light exertion causes the limb doing the exercise to vibrate or shake, in the same way that the muscles shake in a healthy person when they are using every last drop of strength that they have to lift something. I am at the point now where if I stand for more than a minute or two my legs will vibrate/shake and I want to sit down. If I lift a liter bottle of water my arm and hands will shake after a few seconds. I also have intention tremor in both hands. And I have started to drop things.

Exercise intolerance - this came with the weakness. I wanted to see how much strength I had in my upper body so I thought I would see how many press-ups I could do. I could manage to do only two. But what I also found was that all the upper body muscles involved (arms and shoulders, both sides) ached for three whole days afterwards, as if I had done a massive upper body workout at the gym. Yesterday I took my four year old to the park. All I did was carry her for a few minutes and walk around for half an hour - this morning I woke up to very sore arms, shoulders and calfs.

I also have balance issues - it is now difficult to walk in a straight line without drifting to the left or right as if I was drunk. I noticed that I drag my right heel - the back edge of the right heel of the shoe is ground down; the left heel is not worn down.

I have seen a doctor who said that I have no knee jerk response at all and very weak deep tendon reflexes in the arms. Also, no Babinski response - my toes do nothing in the test, neither fanning out nor curling under.

All of this seems to point to lower motor neuron issues. Has anyone here had similar symptoms and if so what were you diagnosed with please?

 

[elelegido]

I forgot to mention, my left arm looks thinner than the right, and if I look at the back of my left shoulder in a mirror I can see the bones of the shoulder joint under the skin, which I don't see on the right side. It looks like there is some atrophy on the left side, which does also feel weaker and more exercise intolerant than the right.

 

[MaxEidswick]

Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.


#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.


#6 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


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Max - Monday, August 18, 2014 12:03:01 PM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.

 

[Atsugi]

What did your doctor diagnose? You seem to be describing your legs and arms all getting weaker, with twitches that are all over the body and head. I can't diagnose that, but it doesn't sound very ALS-like to me. The foot drag is a big deal. Not sure what it means but the good news is that the vast majority of non-ALS diseases are not fatal.

Max (above) points out many important reminders. Two of which I'd like to reiterate. Soreness is not a problem in ALS world. And in ALS, when a nerve is destroyed, its corresponding muscle doesn't feel sore, it simply doesn't work--it's limp and doesn't contract. So for you, pain as a result of muscle contractions is a good thing.

We can't replace a doctor's examination and investigation here, so I'd encourage you not to ask for diagnoses on the internet. Rely on the doctor.

 

[Kosmoskatten]

I would suggest that you discuss autoimmune disorders/ CFS, metabolic and or/endocrine problems with your GP/neurologist. Exercise intolerance, tremor, weakness (does not sound clinical), possible cerebellar involvement ( can't walk in a straight line. ) all gives the possibility of this.

A silent babinsky ( toes do not curl downward ) is considered a normal Babinsky.

I would also suggest an EMG, the hallmark test for MND, and Lyme testing. Maybe also a spinal tap.

We are however no doctors here, so these are merely suggestions. Please turn to your doctor. Sensory symptoms point away from ALS.

 

[Dusty7]

Body-wide fasciculations are generally not the way ALS fascics begin. ALS fascics are due to a nerve trying to attach to a denervated muscle. That happens in the region affected by ALS, which is (initially) not the whole body.

Your muscle weakness and exercise intolerance do not sound like clinical weakness, though they would certainly warrant a doctor visit. I seriously doubt that you can self-diagnose intention tremor and it is not a classic LMN sign, nor is heel drag, nor balance issues.

The only Babinski that is of concern is if your toes flare up.

I do not agree that you have classic LMN signs, but the possible atrophy is a worry. Since you did not mention it, I assume your neuro did not say you have ALS/MND. What did he say?

 

[elelegido]

We can't replace a doctor's examination and investigation here, so I'd encourage you not to ask for diagnoses on the internet. Rely on the doctor.

Hmmm.... The name of this forum is "Do I have ALS? Is this ALS?". Therefore, unsurprisingly and perhaps quite obviously, it is reasonable to expect that the questions running through posters' minds are "Do I have ALS, or is this ALS". Therefore, recommending that posters do not ask this question in a forum explicitly created and so named for people to ask this question seems, well, baffling.

In any case I did not ask for a diagnosis is on the internet. A careful re-read of my posts will reveal that what I actually asked for was other people's symptoms and diagnoses. The reason I asked for other's experiences is because for many doctors, in my experience, if they have not seen a particular symptom for themselves in a patient with a given condition, then that symptom is not relevant. Which is not necessarily true, of course

 

[MaxEidswick]

#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!

 

[Dusty7]

"A careful re-read of my posts will reveal that what I actually asked for was other people's symptoms and diagnoses." And since you yourself are such a careful reader you noticed, "The name of this forum is 'Do I have ALS? Is this ALS?'"

Therefore, one would expect that the people reading your post would be people with ALS, correct? And you were looking for people with ALS to back you up that you have "Classic Lower Motor Neuron Signs / Early ALS?" as you named your thread. And they would side with you against your doctor, whom you obviously have little regard for--
”The reason I asked for other's experiences is because for many doctors, in my experience, if they have not seen a particular symptom for themselves in a patient with a given condition, then that symptom is not relevant. Which is not necessarily true, of course"

I think what you're really mad about is that nobody agreed with your self-diagnosis of LMN or early ALS. Your doctor didn't agree with you. No one on this site agreed with you. So you're mad at us because we won't confirm that you have a terminal disease. I’d say you ought to think about that, but I don’t think you would.

 

[MaxEidswick]

Well -- Several of us have tried to share our experience with you and your fears.

The consensus seems to be that you need to resolve your issues with medical professionals and/or do not have ALS.

We do empathize with your fears, but there is no more we can help you with at this time.

This note is not to deter you from your investigations, but just not on this forum.

You asked, we answered, so please move on.

If you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!

Anxiety can be a real problem that can endanger your physical health. Make sure you tell your medical practioner what you are feeling as well as how you are feeling.

No need to reply. Goodbye and best regards.


-----
Max
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

 

[JohnStatic]

What did your doctor diagnose? You seem to be describing your legs and arms all getting weaker, with twitches that are all over the body and head. I can't diagnose that, but it doesn't sound very ALS-like to me. The foot drag is a big deal. Not sure what it means but the good news is that the vast majority of non-ALS diseases are not fatal.

Max (above) points out many important reminders. Two of which I'd like to reiterate. Soreness is not a problem in ALS world. And in ALS, when a nerve is destroyed, its corresponding muscle doesn't feel sore, it simply doesn't work--it's limp and doesn't contract. So for you, pain as a result of muscle contractions is a good thing.

We can't replace a doctor's examination and investigation here, so I'd encourage you not to ask for diagnoses on the internet. Rely on the doctor.

Atsugi, Max, Nikki and all the others on here, this must be a full time job for you. You're always on point. You and the others on here are doing gods works to reassure us that we're just overreacting.

 

[elelegido]

Hmmm.... The name of this forum is "Do I have ALS? Is this ALS?". Therefore, unsurprisingly and perhaps quite obviously, it is reasonable to expect that the questions running through posters' minds are "Do I have ALS, or is this ALS". Therefore, recommending that posters do not ask this question in a forum explicitly created and so named for people to ask this question seems, well, baffling.

The point of the above post was not to provoke tangential responses of the type that it did. I can't put it in any simpler language or break it down further, so if it is incapable of correct interpretation as is then so be it.

I do appreciate and am grateful for your opinions on my symptoms. Without wanting to get into philosophical debate, all diagnoses are opinions in any case.

 

[Atsugi]

Without wanting to get into philosophical debate, all diagnoses are opinions in any case.

?

Uh, no. Diagnoses come from doctors with tons of training. All else is uneducated conjecture.

Your original question was to find out if others experienced the same symptoms, and you asked what they were diagnosed with. That's a little difficult to get a wide range of answers, as all persons on this forum are dealing with the same diagnosis--ALS.

Please let us know what you final diagnosis is. It may help us to point others in the right direction.

 

[AfraidButNotAlone]

I think you are sick and should persue proper care.

 

[skipper66]

Ditto that !