Trying to understand the weakness factor.

[Thenturn]

Hello everyone,

First, I'd like to say that I am truly sorry for everyone who has been diagnosed with ALS. This disease is truly horrible, and I sincerely hope and pray that medical science can find methods to grind it to a halt.

Admittedly, I wound up finding my way here out of confusion over the onset of ALS. I know you guys have to put up with a lot of terrified people likely don't have the disease ... Mainly, I'm just asking for some information and clarification.

My question is about the muscle weakness, and how PALS become aware of it. I'd looked around a few topics on this site, and--admittedly, I'm a bit confused. Before looking through these forums, sites concerning ALS explained that symptoms at the onset of ALS "may be so slight that they are frequently overlooked."

Trying to find more information on the nature of muscle weakness and how, exactly, it affects ALS sufferers has been hard.

What is the muscle weakness like? Is it a gradual loss of muscle strength? Or is it a marked drop in muscle strength?

Using me as an example, since the 30th of January I noticed an odd sensation in my left arm's bicep (mind that I'm left-handed). I can't describe the sensation--it's not pain, but I'm "aware" of the muscle. Sometimes it feels like I'd recently done exercise with it--not to the point of muscle fatigue or burning, but as if the muscle feels like it's "buzzing" or as if it's "string up." I did notice a yellow bruise on my upper arm that day, near the shoulder.

Later that day I'd noticed that, with my left arm, things seem like they feel heavier. I can't tell if it's my mind playing tricks on me, but passing objects between my hands, or by lifting an object with each hand, I feel a stronger sensation of straining or weight from the left arm. That's the only way I notice it.

Since then, the bruise has faded, but these sensations have not gone away; sometimes I do notice them less, but the feeling of weightiness persists. In fact, when compared to what I feel in my right arm when carrying a two-pound object, my left arm feels as if it's carrying a three or four pound object. On the other hand, I'm still capable of carrying around things without dropping them, and I don't experience any pain or severe fatigue from doing so.

How does this experience compare with the onset of ALS?

 

[KANSASTOM]

I don't think I have ALS but I do have a lower motor neuron problem that causes weakness and atrophy in my left leg and foot. There is no question about my weakness, I can't move my big toe or lift my left foot up. Lifting a pencil with my left big toe would be impossible, and almost the same with my left foot.

 

[trfogey]

What other symptoms do you have that caused you to seek the counsel of Dr. Google? Minor weakness in a muscle that appears to have been injured less than a week ago? Haven't seen that symptom in any medical literature about ALS.

Try letting your arm heal for a couple of months.

 

[Thenturn]

I don't think I have ALS but I do have a lower motor neuron problem that causes weakness and atrophy in my left leg and foot. There is no question about my weakness, I can't move my big toe or lift my left foot up. Lifting a pencil with my left big toe would be impossible, and almost the same with my left foot.

The muscle weakness is more like the muscle won't behave? Did you go through a period where your left big toe and foot felt progressively harder to lift, like you were trying to lift weights with the foot or toe? Or is it more like the toe and feet don't respond to trying to move?

What other symptoms do you have that caused you to seek the counsel of Dr. Google? Minor weakness in a muscle that appears to have been injured less than a week ago? Haven't seen that symptom in any medical literature about ALS.

Well, that bicep sensation and weakness is my only symptom of note. That it seemed to happen suddenly caught my attention, especially since I don't recall doing anything to injure the arm. As far as other symptoms, well ... the bicep itself sometimes feels like it's warm. Others have said they can't feel any warmness when they compare that bicep to the other one, but I can feel a sensation of warmth at times.

The week prior, I'd had a rash of "pins and needles" sensations mainly on my hands and feet, but would sometimes spread to other parts of the body. These mostly disappeared as the week progressed, but occasionally, I'll get a brief burning sting on the insides of my upper arms.

I do occasionally get muscle twitches, but they are rare, brief, and occur randomly through my body. I've also had twitches like that for years, so I don't pay them any mind. Besides that, as I understand it, weakness tends to be the first symptom of ALS, not twitching.

I've not convinced myself that I have ALS--but admittedly, what I have read about ALS left me confused and unsure what, exactly, the muscle weakness entails. Mainly, I'm trying to understand what the weakness is like for people who have ALS. Having a better understanding of how it affects people will make it easier to know when it's time to get a checkup, for myself or others.

Thank you for taking the time to respond!

 

[GlenBrittle]

I did not feel the weakness, it just creeps up.

I was tripping over nothing, like the carpet had a ripple in it.
I would drop things for no reason.

I never felt the weakness, but over time , I was compensating for my left leg, causing me to put stress on knees and hips. I was because of this that I sought help , and ended up in physio. Physio did help me , and every week we would add a new exercise to the routine. It was one of those new routines , that I could not do , that set the search for the problem to begin.

Experience has taught me to seek out the professional that specializes in mnd , rather than a general practitioner.

 

[trfogey]

The sensory symptoms you mention -- pins and needles, burning, etc. -- are far more consistent with injury or other temporary conditions like nerve impingement than they are with any type of neurological disorder. You have an extraordinary imagination or a problem comprehending simple medical material from the Internet if you can read ALS into the symptoms and timeframe you describe.

Hope this helps.

 

[Thenturn]

I did not feel the weakness, it just creeps up.

I was tripping over nothing, like the carpet had a ripple in it.
I would drop things for no reason.

I never felt the weakness, but over time , I was compensating for my left leg, causing me to put stress on knees and hips. I was because of this that I sought help , and ended up in physio. Physio did help me , and every week we would add a new exercise to the routine. It was one of those new routines , that I could not do , that set the search for the problem to begin.

Experience has taught me to seek out the professional that specializes in mnd , rather than a general practitioner.

Thank you! That explains a lot more about what happens during the onset of this disease. Most sites that list symptoms of ALS briefly mention "muscle weakness" but don't go into enough detail about what, exactly, that weakness feels like or what effects it has on a person with ALS.

The sensory symptoms you mention -- pins and needles, burning, etc. -- are far more consistent with injury or other temporary conditions like nerve impingement than they are with any type of neurological disorder. You have an extraordinary imagination or a problem comprehending simple medical material from the Internet if you can read ALS into the symptoms and timeframe you describe.

Hope this helps.

I fully realize that you all have to deal with a lot of hypochondriacs that come to this forum fully convinced that they have ALS despite never having gone to a neurologist, or who still believe they do even after receiving a clean bill of health after getting tests done on themselves.

You all have an amazing amount of patience to be fighting a disease like this while taking the time to help others understand the disease, even if those asking have nothing to worry about.

Please understand, though, that medical material on the Internet isn't always as clear or easy to understand as you say. Sometimes, it's too brief and too vague to get a clear understanding--and this can lead to both confusion and assumptions. I've seen it said on another topic that Google research on medical matters is hopelessly incomplete.

That's why I tried to make it clear that I've not convinced myself that I have ALS, or that I was spooked by "Dr. Google" into believing that I have it. I've only been seeking to understand more about the nature of muscle weakness in ALS and how it differs from my example.

I'd hoped that I wouldn't irritate or annoy anyone by inquiring about this. It was the last thing I wanted to do.

That said, I'm really sorry for winding up being a nuisance regardless. Thanks again for everyone who replied; you've all helped me understand this aspect of ALS much more clearly.

I'll not trouble you further. Please take care of yourselves!

 

[ktmj]

I agree - the sensory symptoms, IMO, rule out any concern about ALS. I would not research ALS anymore - it will drive anxiety and you don't need that.

You sound reasonable and in control right now. Keep yourself that way.

 

[KANSASTOM]

The muscle weakness is more like the muscle won't behave? Did you go through a period where your left big toe and foot felt progressively harder to lift, like you were trying to lift weights with the foot or toe? Or is it more like the toe and feet don't respond to trying to move?

My left leg and foot weakness was gradual. My left big toe was a surprise, just one day I noticed I could not move my big toe, of course it could have been gradual too, I just don't pay that much attention to my big toe.

 

[irismarie]

Well no wonder your left big toe walked out on you if you were not paying it enough attention;-)

 

[KANSASTOM]

That is why I am wining and dining my right foot and big toe right now.

 

[awieleba]

LOL! That is funny Tom and irismarie!

I have issue's with my big toe as well and the rest for that matter. I was not aware until my neuro pointed it out to me at my first visit and realized that I could no longer point my left toe. I use to do pilates and that is all toe pointing so I know that I use to do it and now I cant or move my 2nd toe at all and I know I could do that too. Just didnt realize till she pointed it out. They do know how to detect weakness or oddities that we do not know about.

 

[Tokahfang]

I had a similar experience. Until a neuro asked me to push my feet down, I didn't know I couldn't! I had been using my "pull foot up" muscles and then just letting go for an unknown length of time. It continually amazes me how well our automatic compensators work.