Very curious if we should get a second opinion?

[kbstac]

Hello! I am posting for my father. He was recently given an ALS diagnosis, specifically UMN as LMN involvement has not yet been detected but the doctors believe they saw one arm facilitation.

Background my dad had kidney infection sepsis November 2023 was previously very healthy. After sepsis had some lower back pain we chalked up to from the kidney infection. Summer 2024 noticed left leg spasticity. Had an MRI on spine and some narrowing of the canal so had a steroid injection in spine. This did not help but the doctor said he doesn’t think he got it placed right due to narrowing. The leg spasticity did not improve either.

February 2025 went to a well known clinic for a full neuro workup and was given the ALS diagnosis due to mildly prolonged ulnar F wave latency on EMG as well as an elevated neuro light filament test. He has since started physical therapy and is doing well with this. When he does his stretches he said he can feel something release in his back and his left leg no longer is spastic. It will stay like that for up to a day at a time now before getting tight again until stretching. His gait and balance is still impacted.

We are just very unsure if these breaks in spasticity should be happening with ALS or if something else is at play? Don’t get me wrong the breaks in spasticity are great for him just unsure and therapists have not worked with an ALS patient before to tell us. Appreciate any insight as we are still new to this. Do you think another opinion is warranted? Blessings to all!

 

[Nikki J]

Everyone should get a second opinion. Preferably both diagnosis and second opinion should be from an ALS specialist at a university level hospital.

I am somewhat confused by your description of the diagnostic criteria and think perhaps there was more you were not told. If there isn’t all the more reason to seek another opinion

 

[KimT]

I agree with Nikki. Your dad needs an opinion from a neuromuscular specialist at either a University hospital or someplace like Mayo Clinic.

Is his diagnosis PLS?

 

[kbstac]

Thank you that is helpful! I apologize for the confusion, we really were not expecting the diagnosis and were told it right away after meeting the doctors so basically blacked out hearing anything else they had to say. I do have all the results but the main points were that there is some UMN involvement on EMG, the neuro light filament test was elevated, and the MRI appeared normal except for the slight narrowing of spinal cord due to age. Thanks for your time.

 

[kbstac]

Thank you for the insight, Kim. They considered PLS as LMN impacts are not showing up on EMG but the diagnosing doctor says he saw one arm twitch which is enough to say ALS. We are just not convinced as it seems like a stretch to say ALS at this time still to us. Thank you.

 

[Nikki J]

A twitch is not anywhere considered a lower motor neuron sign to call ALS. The doctor having diagnosed pls might have wanted to stretch things because als is better for getting social security and va benefits.

 

[lgelb]

Totally agree with seeking a second opinion, especially given the spinal history and "release" feeling in PT.

 

[kbstac]

Ok thank you for the info. We are just going off of what the diagnosing doctor said (who is an ALS specialist) but it seemed like a red flag to us to jump to that when he stated no LMN involvement on EMG. Thank you for the help I will be looking for another opinion ASAP.
As far as the spasticity, does that typically come and go like it is since starting physical therapy? We even told the diagnosing doctor this and he seemed unimpressed. Truly appreciate your time, Nikki.

 

[kbstac]

Thank you for your insight!