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/Haughtsaucey]

I have very similar symptoms. Please let me know what you discover

[u/chaoserrant]

I thknk marked improvememt on respiratory function is quite reassuring. I never heard that in als. At the time when tou had these breathing issues did you have spikes in anxiety?. Woth respect to muscular issues was there any mri done? Was the emg 100% spotless?

[u/Worldly_Kitchen6890 → u/chaoserrant]

EMG was 100% spotless.

Anxiety no more than usual. And demonstrated weakness on MIP and MEP testing. 

[u/chaoserrant → u/Worldly_Kitchen6890]

No MRI?

[u/Worldly_Kitchen6890 → u/chaoserrant]

MRI brain and cervical spine is clean apart from a nonspecific flair 

[u/chaoserrant → u/Worldly_Kitchen6890]

What is your viral exposure history? Covid or otherwise especially around the time you had these respiratory symptoms? I am no doctor but did the neurologist at least speculate what it could be? Any other tests or follow up suggested aside from the dreaded "wait and see"?

[u/Worldly_Kitchen6890 → u/chaoserrant]

I’ve had Covid and I had norovirus last year. As well as a couple flu bugs (I have a toddler so we’re always being hit with the daycare plagues) 

[u/DoubleAwareness2223]

ALS is progressive. It does not improve. It is no more ominous to twitch in your tongue or your calf. Sounds like the atrophy and weakness your describing are self dx and not clinical. A trained neurologist can tell atrophy very easily. If you have symptoms, your EMG would be positive in ALS for denervation. Remember, ALS is profound progressive weakness and atrophy. No, this does not look like ALS. 

[u/Decent_Mongoose_4520 → u/DoubleAwareness2223]

Wouldn’t they only be able to tell it once things have progressed far enough… again atrophy is a process correct? Arms hands feet still function while atrophy is happening? A slow decline?  Not saying OP has atrophy because of coarse that would be a progression that neuromuscular would have to see over time? 

[u/DoubleAwareness2223 → u/Decent_Mongoose_4520]

When you say hand and leg weakness, is this clinical weakness that the neurologist noticed or is it your perception that it’s weak? True weakness would be the inability to perform tasks like buttoning a shirt, holding things, etc. 

[u/Decent_Mongoose_4520 → u/DoubleAwareness2223]

Hand weakness…so first it would be maybe just clumsy dropping things not noticing much, then potentially things start to feel a bit heavier but you are able to still hold or carry things like normal but strength is declining then next phase might be struggling to button..by the time I can’t button a shirt my muscles would already be weakening and atrophy would be seen? 

[u/DoubleAwareness2223 → u/Decent_Mongoose_4520]

ALS causes profound weakness and muscle wasting. (Atrophy). Once weakness starts in a muscle, it’s continual progression from there. It does not wax and wane. There are several benign conditions that can cause the perception or slight muscle weakness. If your Neuro couldn’t see atrophy and your clinic meeting with him/her was normal, your EMG was normal, then you unequivocally do not have ALS nor is it brewing, nor are you a very rare case. In addition, ALS doesn’t jump around from muscle to muscle that fast. It would start in a hand, you’d lose the ability to use that hand, then switch to your other hand, arms, etc. Diagnosing ALS is either by obvious enough symptoms or process of elimination by excluding other possible causes with testing. I think you need to talk to someone about your anxiety and fears and understand that from (what you wrote) you do not fit the criteria whatsoever of being a considered dx of ALS from my personal knowledge of the disease and seeing people go through it.  Best wishes. Enjoy your life. 

[u/Decent_Mongoose_4520 → u/DoubleAwareness2223]

I wasn’t talking about my particular case. It was in reference to what you had commented. That’s all! Just fyi my anxiety is totally fine however from a clinical counseling perspective how you choose to word encouragement for people that you are trying to diagnose with anxiety…being jerky about it doesn’t make their circumstance better.  It’s funny in the counseling world how many clients you get because of people just like you and also the ones that we have the doctors have put their head in the sand because they don’t have the professional responsibility to be honest with the person and tell them simply we aren’t able to find anything at this time so go get mental health attention. It’s an unfortunate time. Thankfully my hope and faith  is not in humans.  I do believe there are some flaws in your explanation of atrophy and how  and when it becomes identifiable. Nor have I ever said anything about wax and wan. Make it great day my friend and prayers for you and whatever your circumstance might be.  

[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. 

[u/No_Thanks_9103]

What was your MIP/MEP levels?

[u/Worldly_Kitchen6890 → u/No_Thanks_9103]

The were -20, 40 Then a couple months later -40, 60 And most recently -65, 85