2 EMGs, Still Tingling—Do I Accept This? 39F

[Brianna]

I’ve had 2 EMGs 5 weeks apart from different neurologists. The first EMG showed some sensory NCS findings that suggested a sciatic nerve injury. The second—done by a neuromuscular specialist—was completely normal, though it didn’t test as many sensory nerves. He didn’t think anything was wrong with my sciatic nerve.

My main symptom is tingling along the outer side of my left leg below the knee, going on for about 4 months, along with pain and muscle tightness in that area. The second neurologist thought the tingling might be small fiber neuropathy, but I’m skeptical since it changes with position. He felt the pain and tightness were musculoskeletal.

My GP thought I had weakness with big toe extension, but the second neurologist tested that and found no weakness.

Now I feel stuck. Do I just accept that my leg is tingling and I might never know why? Or is there more I should be doing—and if so, what? It’s hard not to feel anxious when I don’t have a clear explanation.

Thanks for reading—I’d really appreciate any insight or advice.

 

[ShiftKicker]

Hi there-

Please make sure to read the Read Before Posting link for why sensory issues (tingling) point towards something other than ALS. NCS testing is for peripheral nerves and not at all related to ALS. So if the NCS indicated an issue, you would have to speak with your doctor about what the next steps are. The EMG is the part that can detect/eliminate ALS and it sounds like you were completely cleared.

Take care

 

[lgelb]

I would try therapeutic massage. Sometimes a nerve/muscle gets salty and it needs a little reset. And one can lead to the next.

If that doesn't help, I'd ask about PT. You might have a weak muscle or minor soft tissue injury.

 

[Brianna]

I’ve been doing PT but just for a couple of weeks. It is helping with the muscle tightness according to the PT, but not with the tingling.

 

[ShiftKicker]

Tingling is sensory and points to something else. Please do make sure to read the link I gave you.

 

[Brianna]

Update - I think something is wrong here. The neurologist insists that the NCS is normal, but these numbers don’t look normal to me (and aren’t, according to ChatGPT). This is for the motor NCS:

R peroneal - EDB
Ankle - latency 3.23 - amplitude 5.9
Pop fossa- latency 11.96 - amplitude 5.4 - distance 40.7
Fib head - latency 10.35 - amplitude 5.4 - distance 31.4

L peroneal - EDB
Ankle - latency 3.79 - amplitude 5.5
Pop fossa - latency 13.13 - amplitude 4.5 - distance 42.8
Fib head - latency 11.06 - amplitude 5.3 - distance 32.3


At this point I’m having the following symptoms:

1) tingling in left lower leg, position dependent
2) tight muscles in left lower leg
3) pain on outside of left knee
4) possible weakness with left big toe extension (GP thought I did, neuro thought I didn’t)
5) increased heart rate and difficulty catching breath while running - I kept blaming this on not running for a while, but it fits with the pattern…

I did have an MRI and while it shows a mild L5 nerve root compression, the neurologist said it’s minor enough that it shouldn’t cause symptoms.

I think I need to push harder and maybe get a referral to an ALS specialist.

 

[ShiftKicker]

Hi there-

This really isn't something we can help you with here. The EMG is what is used to rule out ALS and you are looking at the NCS, which assesses for issues in the peripheral nerves. You may wish to speak with your doctor or neurologist about your concerns, but this forum is not going to be able to help you. Again, you have sensory issues, which point elsewhere. Your diagnostic search needs to be elsewhere, as ALS is not the issue.

Take care.

 

[Brianna]

Thanks for the reply. Would someone be able to give an opinion on the NCS numbers though? From what I understand a minority of PALS do have sensory issues, and I have motor issues too - the tight muscles and the big toe weakness.

 

[ShiftKicker]

Please return to your doctor to get further clarification. Your EMGs have cleared you of ALS and you report non ALS symptoms.

 

[lgelb]

The sensory issues that you mention would not be present in the NCS of someone with ALS at onset. You are good to go. It is very possible that completing a course of PT will even help the tingling.

 

[Brianna]

I’ve been having some concerning heart and lung symptoms over the past few months. Just two months ago, I was running 6 miles a day. Now I get short of breath even with light exertion — and sometimes even while sitting still. During runs, my heart rate spikes quickly, sometimes hitting 190–200 bpm, and I’ve felt dizzy when that happens.

I’ve been to the ER multiple times, but they haven’t found anything — normal oxygen saturation and normal basic labs. I also had a normal spirometry test.

I’m considering the possibility of ALS because I’ve also had persistent tingling and mild weakness in my left leg. I’ve had two normal EMGs and a normal NfL score, so if this is ALS, it’s likely in the very early stages.

I know ALS can eventually affect breathing and possibly even autonomic function, but I didn’t think those symptoms could show up so early. Has anyone here experienced respiratory or heart-related issues as an early sign of ALS?

I’m about to get an echocardiogram and a Holter monitor, but I don’t know what to do next if those come back normal. I feel like something is really wrong, but so far nothing has shown up on tests.

Thanks for any insight.

 

[ShiftKicker]

Hi Brianna,

This is not how ALS starts (please re-read the "Read Before Posting" link), so you will need to continue working with your doctors to find your answers. Not having answers or any certainty can be very stressful and anxiety provoking, so I am hoping you are also speaking with someone who can provide you with some tools to deal with overwhelming worry about your health.

We really can not provide you much in the way of answers about your non-ALS symptoms, but do urge you to stop trying to view everything through the filter of your fear that this actually ALS/MND. It has been eliminated from the list of differentials via a clinical exam and electrodiagnostic testing, so to continue focusing on and researching it online means you may be causing yourself unneccessary stress.

If you are unsure about what to do next, the person to ask is your doctor. They have your full medical history and will be able to provide you with more information about next steps for your non-ALS symptoms. To assume it must be ALS if your heart tests don't show anything really does show how far into health anxiety you have gone as the issues you report are entirely unrelated to Motor Neuron Disease.

 

[lgelb]

Even if the echo and Holter are normal, sometimes people just start having tachycardia, especially if worried about their health in other respects. Medication, stress reduction, and taking some time for relaxing activities however you define them -- from nature walks to yoga or tai chi, or happy hour with friends, can help. Your PCP will, I'm sure, be happy to discuss meds with you once your tests are back.

Avoiding dehydration, self-medication, smoking/vaping, and other triggers is also helpful.