Does this sound like possible ALS?

Hello and thanks in advance for any and all responses.

Now then I've been experiencing a weakness in my arms and legs, my right arm and right leg seem to be effected more than my left arm and left leg. This has been going on for awhile now, at least a few months.

It's hard to describe how my legs and arms feel, but I'll try. My legs feel like they are primarily heavy.. like they are being weighed down by cement. My muscles will sometimes get sore as well, but it's mostly just the heavy feeling.

With my arms everything feels heavier than it should feel. I am the night supervisor at a grocery store and I'll pick up something like a bottle of wine and it will feel like it weighs twice as much as it should. Much like with my legs, my arms and hands will cramp up from time to time.. but it's mostly just a heavy and weak feeling. I also can 'feel' what I would think are fasciculations in my arms and legs from time to time.

I say feel because they are typically not visible.... will admit that aspect may be in my head since I know fasciculations are a symptom in ALS and I am deathly afraid that I might have it. That part being in my head would explain why they are rarely visible, not sure how common non visible twitching would be.

I will say that up to this point I can still do pretty much everything I was able to do before. As an example I don't have a vehicle right now and on days where my roommate's schedule differs from mine, I walk to work.. about a 20 minute walk and I'm still able to do so. I'm also on my feet throughout my 8 hour nights and for the most part again able to do so, although I do feel myself getting tired easier.

I put off seeing anyone for awhile, partially due to pure stubbornness on my part and partially because I don't fully trust most doctors (stems from a series of messups in the treatment of my late mother's stomach cancer)

I finally found a doctor and saw him October 1st, he did a basic exam and ordered blood tests.. we both expected nothing more than a vitamin B12 deficiency as I've been vegan for two years and it's common in those who don't eat meat.

My blood work came back fine however and I have been referred to a neurologist for a EMG test on November 9th.. the day before my 31st birthday of all days.

Sorry for being long winded and I realize this might be something else altogether, I mostly just want to know if this sounds like it 'could' be ALS... mostly for purposes of mentally and emotionally preparing myself for a possible diagnosis.

Thanks again!

It is not usual for someone to have two limbs affected at the same time. For myself I had twitching in my left hand and arm for two months and then started developing weakness in same. I never experianced a heavy feeling in my limbs and still don't just weakness. Hope for the best, but you will have to see your doctor for a proper diagnosis.

Thank you for the response lavender lady. Am pleased to hear that this seems atypical from what you know.

I wanted to mention something real quick that I forgot to mention in my previous post.

I fully understand that you all get bombarded with people asking questions very similar to my own and I also understand that they might get old and redundant after awhile.

It's not my intention to be annoying, or to ask irrelevant questions.

Believe me when I say that I hope you all reply with replies similar to lavender's in saying that my symptoms don't quite fit with ALS. I'm definitely not one of those people who are going to remain convinced I have ALS if I'm told by The Neurologist that I definitely do not.... not even convinced now, was just curious about if it seemed possible given my symptoms as described.

Am I scared? A little bit.. thus the thread.... neurological problems are scary and when it turned out this wasn't a vitamin deficiency, I got even more scared. I should know more on November 9th when I take my EMG test.

Having said that it's not my intention to disparage those of you who truly do have this terrible disease and my heart goes out to each and every one of you, as well as your family and friends. Having lost my mother to stomach cancer back 2002, I know all too well what a devastating diagnosis does to not only the person inflicted, but their loved ones as well.

Thanks again for the reply Lavender Lady.

Shyguy your symptoms could be indicative of many conditions --from a response to a virus that leaves muscles inflamed, to MS, to CIDP, to a myopathy etc. etc. They don't sound typical of ALS, but the only way to know what is going on is to see that neurologist. Everyone responds differently to diseases. My husband was misdiagnosed by a neurologist as having Carpal Tunnel with nerve impingments, and finally after major muscle atrophy and weakness (inability to turn a key, use a knife and fork, foot drop, etc.) a second neurologist diagnosed him with CIDP which is treatable. But he wound up with permanent damage to this rt arm and leg --so it is all a big guessing game even with some neurologists. The best neurologists for these issues are those specializing in neuromuscular disorders. We got a fairly quick diagnosis at a neuromuscular disorder clinic after wasting 2-3 years with a general neurologist. Best of luck, and let us know how things turn out.
Laurel

Hello laurel,

My doctor did in fact mention MS as a possibility when I saw him. This was of course when we both thought it was likely going to be a lack of vitamin B12 and nothing more and he mostly mention MS as a unlikely possibility, but a possibility all the same.

One thing he mentioned struck with me and honestly I wasn't thinking there was even a 1 percent chance of ALS prior.

He stated that my right arm showed signs of possible atrophy and then my mind went in a million different directions and started to for the first time wondering if this could be early ALS.

I will indeed keep you all posted once I hear something.

Feeling weak but still being able to do things well and for long periods is a good sign that points away from motor neuron diseases. Atrophy can be caused by tons of other things, also. Don't fret too much before your EMG, it is used to diagnose more than just ALS! They can pinpoint many different nerve problems on an EMG, it is a very helpful test. Did your doctor tell you if you are experiencing any clinical weakness?

Stick with that "trust the neurologist" attitude, and you will do well. Please do let us know how your EMG came out.

Hi Tokahfang,

My doctor didn't mention anything to me about clinical weakness.

From what research I've done, an EMG does seem like a rather useful test.

I will say that what I've thought of as being possible fasciculations may not be those at all.

Kinda hard to explain... almost a buzzing or pulsating feeling that I can feel underneath the skin in my arms and sometimes my legs.

As promised an update following my EMG test.

My nerves are apparently normal. The Neuro said it could still be something muscle related, but he didn't seem all that concerned.

I'm basically still not sure what's going on, although it definitely appears to not be ALS and likely not MS either judging by what I found out today.

I think diabetes is a definite possibility, as my family has an extensive history of it.. most logical next step I think is to call my physician and see if the blood test I did last month would have ruled diabetes out.

Appreciate it all the help from you all, wish nothing but the best for each and every one of you.

Glad to hear it! Hope you find the answers you are searching for!

Won't let me edit my post.

Only two things I will admit to being mildly concerned about are:

The test itself and exam didn't seem as thorough as some I've read about online (only did one arm for example and neither of my legs.. didn't test for the babinski sign etc)

I remember hearing noise the entire time and from what I've read anyway there shouldn't be noise when the muscle is rested.

That being said... I certainly feel better about my situation that what I did before, just would be lying if I said that those two things (noise and possible lack of thoroughness of the testing didn't concern me at least a little bit)


Going to give it a week or so, then I plan on getting in touch with my physician and finding out what I should do from here.

"Ambient noise is generated by electromagnetic devices such as computers, force plates,
power lines etc. Essentially any device that is plugged into the wall A/C (Alternating
Current) outlet emits ambient noise. This noise has a wide range of frequency
components, however, the dominant frequency component is 50Hz or 60Hz,
corresponding to the frequency of the A/C power supply (i.e. wall outlet)."

Not all noise on the EMG comes from you. There is also impedence differences, scar tissue, etc... lots of things make audible EMG noise. Trust the guy who did the test, he is the one trained to sort what is signal and what is noise out.

At least from your comments here, your arms were worse, so if your arms didn't show anything interesting, I'm not surprised he didn't do your legs.

Congrats on testing out of neurological illness!

lyme can also cause symptoms very similar to als. (I often wonder is I was tested for that)
I had/have a tingling in both feet and they tested me for diabetes over and over..
My confirmation only came after a muscle biopsy..
I had so many different tests done over the course of a year or two..
The problem with ALS is the diagnosis is based on ruling out all similar other ailment that cause similar affects.

The other thing they never seemed to test me for was heavy metal poisoning even though my job exposed me to Copper/Lead/Mercury/Aluminum on a regular biases.. I've also had major head trauma in my life..

Seems I drifted off topic.. However rest assured your symptoms can be caused by many (treatable) conditions.