Follow up from Previous Closed Thread

jcp1776

New member
Joined
Aug 16, 2022
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2
Reason
Learn about ALS
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00/0000
Country
US
State
PA
City
Philadelphia
Hello— my previous thread from Aug 2022 was closed but I wanted to get the opinion of this group.

I’m 36. Since 2021 I’ve had varying symptoms, muscle loss and neuro evaluations, MRI’s, EMG’s of upper and lower extremities, blood tests. No issue could be demonstrated (their words) through 2022.

I have symptoms to my left arm that a hand surgeon believed to be cubital tunnel syndrome and I had ulnar nerve transposition procedure in Feb 2023. Since then I followed up due to ongoing symptoms and he felt it was no longer just related to an ulnar nerve issue.

In Aug 2023 I saw my neurologist who repeated EMG which showed slowing of motor nerve conduction velocity just out of normal range and he referred me to a neuromuscular specialist. I saw that specialist in 11/2023 he felt that the EMG in question was not concerning and my exam was fine and he suggested just checking another EMG and “maybe check for other conditions like FSHMD if that EMG shows something” I also happened to speak on the phone with his colleague who was a mutual friend and the ALS specialist in their department and she felt everything from my story didn’t behave like ALS. At that point it was the holidays and I did not want to go through another EMG then and still have not.

Since then I am still experiencing progression of symptoms. I am experiencing more atrophy to varying parts of my upper and lower extremities, my face and even feel like my right core muscles and right back muscles are affected. My left gluteal muscle is noticeablely different sizes than my right side.

It seems like the original symptom regions from 2021 are now the “worst” parts with other new areas affected.

I have some weakness to my left hand and left foot/leg and am noticing it more with walking, balance, typing, but am still active and can perform daily tasks (workout at the gym, golf, hike, etc).

I am a physician. And while I do have anxiety, I clearly can tell something is abnormal. What are your thoughts and do you all recommend going back to my neurologist? Part of me is just ignoring everything until a big shoe drops and I am forced to seek care, and another part of me thinks I should pursue further investigation to “have an answer.”

Thank you in advance.
 
Last edited by a moderator:
If you are worried of course you should go to a doctor and get evaluated. You can’t objectively assess yourself physician or not so go back to the person who saw you before and has a baseline
 
My school of thought is, don't pursue to get an answer, pursue if your function is compromised.

Meanwhile, looking for palliation, if you will, in sleep, hydration, diet, stress, bodywork, etc. is meeting in the middle. If you are in the gym a lot, maybe useful to have a skilled trainer observe your form and regimen to make sure you're not favoring or ignoring one side.
 
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