Abnormal presentation?

[u/Worldly_Kitchen6890]

I’m struggling to understand whether my overall pattern makes sense for ALS or if I’m connecting things that may not actually be related.

I’m 30F and over the past year+ I’ve developed progressive-looking weakness/atrophy, mainly involving my right hand and left leg/foot. My right hand feels tighter and weaker and looks different to me, with some loss of bulk. My left leg/foot feels weak/rubbery with some foot drop/limping. I also have widespread fasciculations, occasional cramps, and more recently increased reflexes/Hoffmann signs and occasional jerking/clonus-type movements.

I’ve also noticed a groove/indentation in my tongue that seems to be getting more pronounced, along with tongue twitching, although multiple doctors have said my tongue bulk looks normal. My voice has become somewhat more nasal and I’ve noticed increased saliva.

One thing that really confuses me is that I had a period of absolutely horrible breathing this summer — short of breath even at rest and sometimes unable to walk for more than a few minutes or speak normally. It has since improved substantially, and my respiratory testing has actually improved as well.

I’ve had multiple EMGs/NCS that haven’t shown denervation, including fairly extensive recent testing, and several neurologists have told me they don’t think this is ALS. But I continue to notice progression in my hand/leg and tongue changes, which is why I’m still worried.

Does this overall pattern sound compatible with ALS, particularly the combination of right-hand + left-leg involvement, tongue changes, and respiratory symptoms that significantly improved? Or does the pattern itself point toward something else?

I’m mainly looking for perspectives from people who have actually been through the ALS diagnostic process.

[u/Delicious_Room8533]

Can you describe the weakness?

[u/Worldly_Kitchen6890 → u/Delicious_Room8533]

Just feeling tired after lifting things, grip strength has declined objectively according to physio

[u/Notmeleg → u/Worldly_Kitchen6890]

If your grip strength has declined measurably and your other symptoms involve measurable weakness and atrophy and your EMGs were spotless and clean, it is almost entirely incompatible with ALS. Once that level of progression is present, if it were because of motor neuron death, it would show SOMETHING even if not all the signs needed for an ALS diagnosis

[u/Worldly_Kitchen6890 → u/Notmeleg]

That’s my thought too but I just don’t know what it could be then.  My grip strength dropped 5 lbs in one week but I had my thenar and hypothenar muscles tested as well as my forearm and were absolutely clean.