Not sure what to think, I know I don't agree though and can't get any better answers

[Cary1340]

I saw a Neurologist in February 2025, via video after an hour and a half drive who referred me to another Neurologist 3 hours away, who I saw last week. It took a long time 13 months, to get a suitable primary care physician, then a bunch of denied Neuro referrals. I live in a rural area so most providers come here for training and move on.

I had a concussion in November 2023, it was mild, I was working from home for the last two years, so I wasn't getting much exercise except when I when out dancing. I returned to work in 3 days and within a week I developed drop foot, started having trouble walking, feet would not do what the eyes told them to do, then talking, swallowing, fine hand movements got difficult, all in progression. I did have a chiropractor who specialized in neuropathological problems, she did what she could as an energy healer, and each visit helped but only lasted a few days. She said she thought I had post concussion syndrome , now it's persistent post concussion syndrome. The timing and symptoms match to a tee but are not the usual symptoms.

It's been 16 months since the concussion and now the neurologists are saying that I have ALS or PLS and that they won't know which until the EMG either way they tell me I have ALS or MND. I think it is more like FND because when I count backwards from 20 when at PT, I no longer feel like I will fall, my brain is distracted enough, other symptoms like speech and swallowing have gotten better, so I believe that is a sign it isn't ALS/PLS but my Primary says that is not remission, I know I am getting stronger at OT based on the dynamometer reading and at PT based on the strength of the exercise bands.

EMG has no date yet but I was told it would be 1-2 months.
I am at a loss but really don't know what is going on, based on what I am reading here it's not ALS/PLS or MND.
I retired in September 2024 and it hasn't been very fun, fell twice since then and really injured my back, no one seems to take that into consideration.
Also quit smoking 5 months ago after 40 years, symptoms from that mirror some symptoms of MND, most of my symptoms do.

Any thoughts?

 

[Nikki J]

It is really impossible to say. You are right that als doesn’t get better though sometimes pt and ot tricks can temporarily help with specific functions.

We don’t see you and don’t know what your clinical exam showed. It sounds like you had significant upper motor neuron findings for them to say pls / als. What are the credentials of the neurologists you see? Are either als specialists? That is what you need now mnd is on the table no matter what the emg says. We have seen people incorrectly diagnosed with mnd by community neurologists

 

[Cary1340]

The neuro I saw last week was an ALS specialist, that scared me when I found out..

 

[Nikki J]

I am sorry. In your place I would wait for the emg, have a follow up with the specialist ( are they university level with a clinic?) even if they are if it is still called mnd I would get another opinion ( als clinic university level). We all need two neuromuscular opinions

 

[Cary1340]

Sorry to not be prompt in replying, I do have my EMG scheduled for the 29th. The neurologist I saw is a university professor and is the director of the clinic where I was referred. I reached out to her 12 days ago and she just got back to me today. (She told me I have ALS and we were doing the EMG to rule out PLS), honestly not sure how one could diagnose definitively without doing an EMG and missing mimic lab work the lab work which is now in progress, The first neuro never ordered the specific ones she wanted, she will be requesting the EMG be moved up.

I think that it is very bad practice to tell someone definitively they have ALS without knowing all of the facts, especially from someone with so much experience, she wasn't even aware that my symptoms have and still are improving, question never asked by her and was apparently ignored by the first neuro and I was in shock to hear ALS so I didn't push the point for a few days. Anyway she told me to wait on taking any prescriptions and don't worry about contacting the ALS network just yet, she would add that information to my record, that the EMG will tell us.

My guess is that she thought that I knew my diagnosis when I met with her, it seems that way.

Now I am a bit more optimistic and totally perplexed.

Hope it's not some phantom trickery in the early stages of ALS from OT and PT.

 

[lgelb]

Unquestionably, the diagnostic criteria for ALS include an EMG. So that is puzzling to me as well, as is the time course and other aspects.

I would not be doing chiro right now -- not sure if you are, just a comment.

Not all faculty are created equal. Whatever the final diagnosis she provides, I would give some thought to a second opinion even more outside your area, evidently, even if it's records review/telehealth, from somewhere like UCSD, UCSF UCLA, (not sure where you are/who's in network). Your PCP should be able to expedite a second opinion referral given an ALS dx.

Did you have brain/spine imaging when you had the accident?

 

[Cary1340]

Thanks, I'm not doing chiro now, she is my friend. CT done at injury.another 3 months later, 2 MRII don't want to out the doctor but she is from one of the Universites you mention.. well known. I plan to get second opinion it should ne easier with a diagnosis.

 

[Cary1340]

Yup EMG confirmed ALS, I'm still in denial.

 

[Nikki J]

I am very sorry. Give yourself time to grieve and adjust but remember there is life after diagnosis