Symptoms and guidance please

[maggied]

I'm 33 year old female, perfect health until now.

Months ago, very occasionally I started feeling weakness in my left hand, not able to grip. I didn't pay much attention, until it got worse. My left hand is very weak now and unable to pick up anything heavy, also fingers move slowly. It's progressed to my wrist and arm, and no sign of any other pain or numbness or tingling. I just noticed yesterday my left upper arm extremely soft, signs of muscle atrophy I think. Within last 2 weeks, I also started feeling both my lower legs sore. I'm not sure how to describe it, but might be similar to when I'm tired from hiking or overuse of legs before. My calves also feel a bit soft when muscles are extended, but I'm not sure, as I've never looked for these before, just noticed soft similar to my arm. I think I've also noticed my right hand having trouble grip a heavy cup a couple of times, I might be paranoid, but this is how left hand started and I didn't pay attention.

Doctor won't say much, but he asked a lot of questions related to ALS symptoms. He did a bunch of simple tests, did not mention anything much, but did mention hyperreflexia, said he's never seen anyone with this much response. He has been trying to help me to book an urgent neurologist appointment. I got the appointment date, it's late June, which is still far away. The appointment also specifically mentioned EMG test, which I understand is the main test for ALS, looks like based on his assessment, they are skipping the general ones like MRI, went straight for the specialized test.

I'm a bit terrified, as the closest match to my symptoms is ALS, but neurologist appointment is still over 6 weeks away. Any suggestions on my symptoms?

 

[KarenNWendyn]

So I take it the first doctor you saw was not a neurologist.

There are a number of possible explanations for your symptoms. For example, narrowing (stenosis) in cervical spine. ALS is actually low on the list of possibilities. In addition to EMG tests, someone will probably order an MRI of your neck.

If you assume you have ALS, you’re going to look for issues in other areas or attribute symptoms to ALS. I advise you to let the neurologist do his or her job. Go in there with an open mind rather than assuming you have ALS and that it’s up to the doctor to confirm your suspicions.

You can always ask to be put on a cancellation list for an earlier appointment.

Best of luck and let us know how it turns out.

 

[maggied]

Thanks a lot for your reply.

Right, the doctor I saw is not a neurologist, still waiting for my appointment. I believe he talked to the neurologist and that's why they booked me for EMG. The reason I'm really concerned with ALS is the lack of pain/numbness/tingling, but my arm/hand is getting extremely weak, unable to do a lot of normal tasks like opening a slightly heavy door with doorknob. The other conditions, such as stenosis, shouldn't there be radiating pain?

 

[GregK]

....The other conditions, such as stenosis, shouldn't there be radiating pain?

Sorry, we do ALS, not guesswork. :-(

 

[maggied]

The neurologist was able to see me earlier, EMG/NCV test for my left arm definitely indicate motor neuron issue, and sensory and everything else not affected. He also ordered MRI right away for my neck, waiting for results now. While there are still other things, but he mentioned some are not likely due to symptoms and EMG results. Looking at my hand/arm symptoms, which is progressively getting weaker in the last while, is this very similar to ALS arm onset?

 

[KarenNWendyn]

I want to make sure I’m interpreting your post correctly — so it sounds like you’re saying the neurologist felt the EMG of your left arm was consistent with a motor neuron disease. Did he test any other areas?

It sounds like he is still in the process of ruling out ALS mimics, hence the MRI.

I’m sorry to hear the left upper extremity looks like a motor neuron problem. To diagnose ALS by El Escorial criteria requires documentation of characteristic findings, either by physical exam or EMG, in at least 3 spinal segments, and also ruling out mimics. Spinal segments include bulbar, cervical (which includes arms), thoracic, and lumbar (which includes legs). Diagnosis also requires finding both upper and lower motor neuron abnormalities.

So if you have findings documented only in an arm, that counts as one spinal segment, and unfortunately you have to play the waiting game. My neuro also wanted to watch me over time to document disease progression before giving me an official diagnosis.

I know it’s hard to wait for answers. I hope I have clarified the diagnostic process for you. Unfortunately I can’t really answer your question if your symptoms suggest ALS arm onset.

 

[maggied]

Thanks. I've heard ALS diagnosis is long, it's by excluding everything else, but I didn't know it sounds like it has to be confirmed in 3 segments. So it will have to wait for symptoms in legs and neck?

The neurologist tested mainly left arm, he did NCV on right arm for comparison only. He noted muscle atrophy right away, and confirmed that it is definitely motor neuron related, but of course not sure the cause yet, both ulnar and median nerve are affected, I can't remember if he said anything about radial nerve, but my wrist is definitely affected already. He didn't test legs, not seems to be concerned about them yet.