Fearing ALS

[Ow1984]

Lol you are all saying you are experiencing sensory sensations which do not happen in ALS. No numbness, no tingling, no “sunburn” feeling, pain and cramps come very late in the disease. It’s not an “oh I feel weak”, it’s a, “why can’t I lift my arm above my head”. I only share this because I have also been consumed with this fear and have been to two neurologists who did the reflex checks, the strength tests and the body examinations and who have both said that it looks like I have no problem. The second gave me a referral to a University Hospital for an EMG but said he didn’t recommend it, only if I couldn’t stop my worrying. He also said that the first thing most people will notice is the muscle wasting of their hand, and especially thumb muscles, which then leads to the weakness of that hand. Both I told about my twitches and both didn’t really seem to care about them all that much. The strength tests seem to be the most important, especially the hand grip tests and tests against resistance. What you are all expressing are classic anxiety symptoms made worse by hypersensitivity and laser sharp focus on the symptoms - something I am all to familiar with myself.

My doxtor also also said you have to remember that als is an incredibly rare disease. For instance, Tokyo university medical hospital, one of the biggest in japan, only saw 160 als patients last year (in a country of 120 million people - including a lot of old people) and more importantly o it administered about 200 emg tests for the whole year. Just think about how minimal those numbers are in a country with such a large population. Easier said than done but you just gotta take a step back and try to chill out and not focus on the symptoms because I can guarantee you that you are making them worse

I have noticed that my Left thumb muscle is smaller than my right, I'm now worried I have muscle atrophy in my left hand this is also the finger and thumb where my twitching has been.

[BlueIris]

Bodies aren't symmetrical, though. As has been pointed out, ALS is vanishingly rare.

[Fishmanpa]

For all who have this fear, I suggest you read THIS as many times as you need to.

From that article...

ALS is about failing, not feeling.

ALS is about failure—falling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness.

It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work

Everyone here are using the words "feels like".... "It feels weaker"... etc.... Read the above. That alone rules it out. Carry on if you wish but none of you have ALS.

Positive thoughts

[Ow1984]

From that article...

ALS is about failing, not feeling.

ALS is about failure—falling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness.

It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work

Everyone here are using the words "feels like".... "It feels weaker"... etc.... Read the above. That alone rules it out. Carry on if you wish but none of you have ALS.

Positive thoughts

But having read lots of posts here now it says that atrophy is also a 1st sign. My left hand thumb is certainly smaller than my right. Does anyone know what does atrophy feel like? I know that hands are asymmetrical
, how quick does atrophy take before weakness is noticed?

[Fishmanpa]

But having read lots of posts here now it says that atrophy is also a 1st sign. My left hand thumb is certainly smaller than my right. Does anyone know what does atrophy feel like? I know that hands are asymmetrical
, how quick does atrophy take before weakness is noticed?

"But".... The dragon's favorite word! And it's apparent you haven't really comprehended the words in the link I posted.

Positive thoughts

[Seymour]

I have actual weakness. My legs tremble and twitch when I walk any longer than a few minutes.

[nomorepanic]

I have actual weakness. My legs tremble and twitch when I walk any longer than a few minutes.

Isn't that because you didn't move much for 3 months?

[lofwyr]

But having read lots of posts here now it says that atrophy is also a 1st sign. My left hand thumb is certainly smaller than my right. Does anyone know what does atrophy feel like? I know that hands are asymmetrical
, how quick does atrophy take before weakness is noticed?

Atrophy isn't having one part smaller than another. It is not being able to pick up a pencil because your thumb is so wasted and weak.

Also, are you left or right handed? I am right handed and my left thumb is WAY bigger than my right. There's no sense to that, it's just how we are. You have no symmetry, symmetry is a myth. One kidney is probably bigger than the other, one eye too etc etc.

[AJG]

Dominant hand will look stronger and more muscular than the non dominant one. My own doctor also told me this which makes sense.
As to some prior comments I am starting to wonder about a pinched nerve or something along those lines. I have no family history of any muscular neurological disorders. I was the lucky and first one in my family to get scoliosis. Unfortunatelly there is so little information out there about what happens in adulthhood after surgery at least with the newer metal that they used during my generation. There is a lot of information about Harrington rod issues which they don't use anymore to my understanding and it was not used on me. My xray of my back came back unremarkable aside from slight rotary scoliosus. This was no news to me as surgery never corrects it 100%. However, the MRI hopefuly will shed some light.
My twitches now are primarily in my ankles and feet, occasional bicep, butt, calves. Im kind of at the point whatever it is bring it on as I'm so exhausted of not knowing

[Seymour]

Is it common in ALS to have twitches almost in every part of the body?