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ThankYouAll

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Jan 28, 2023
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Reason
Learn about ALS
Diagnosis
00/0000
Country
US
I’ll try to make this quick and put everything in a chronological type order to save time and make reading easier.

Male/ 31 Years Old

Start of observations

2020
Internal vibration type feeling. That’s the best way to describe it. Began shaking when doing fine motor skill task also around the same time.

2021
Muscle aches and fatigue (essentially I started noticing that my forearms would get sore almost like a cramp when using them unlike before). You could call it an arm pump. When using a screwdriver is a good example. Hand and forearm would get a tight sore feeling.

10/2022
“Stiff” Neck (pain if looking to my right, like straining, not sure you’d call that stuff). This strain gets better and worse depending of the time of day. Changes everyday, but has been consistent for since the start date.

11/2022
Right foot cramp type feeling. Almost pin point. It started in the arch of my foot. It sort of feels like a cramp, but doesn’t go full cramp on me. After about two weeks of this feeling (it does come and go) it started on my left foot. It varies in intensity, sometimes depending on how I place pressure it will cause a sharp pain of the band that runs on the bottom of your foot through the arch.

12/2022
Cramping in right and then left hand. Just like feet, but in hands. Again, not sure if it’s a cramp of nerve type pain because it is pin point. Sometimes I can even squeeze the area and induce pain. It is brought on by use.

01/05/2023
Around the 5th of January, bam, twitching everywhere. It started one night out of no where. My arms, legs, torso, stomach, neck, face, hands, and feet.

01/12/2023
Muscle soreness. No real reason for the locations. Even sore to the touch. Very emotional. Crying at times for half an hour. Contributing this to emotions and fear after Google searches.

01/20/2023
Neurology appointment w/ EMG. Neurologist stated I had bilateral brisk reflexes and wasn’t concerned. He didn’t perform Babinski or Hoffman’s. He did observe that my left calf was slightly smaller than my right. 38cm to 40cm. Due to this he did an EMG. During the EMG he tested my right hand and arm, left leg, and right calf for comparison. He advised that he saw S1 radiculopathy, but no MND. He ordered an MRI of my lumbar.

01/28/2023 (Today)
Widespread twitching has definitely calmed down. I still get random twitches in my face, arms, torso, and feet, but it mainly has relocated to my right leg, both feet, and left eye. My right leg almost feels as if it’s constantly twitching and vibrating. This is not the leg with the smaller observed calf, that is my left. These twitches do seem to subside when I move my leg. When I move muscle groups, after they do twitch sometimes. Pre-cramp/pain in foot and hands continue, but at a diminished rate and intensity. Could be me getting used to it. Leg aches (sort of like the aches you get as a teenager when growing) have started and I have had one or two (perceived) isolated tongue twitches.

(No muscle weakness and God’s willing it stays that way. I’m so sorry that you or your loved one/s did have weakness.)

Questions/ concerns
Do any of these progressions or symptoms sound familiar?

Should I or would you be concerned about the thoroughness of the Neurologist? Not doing Babinski/Hoffman’s was my first observation. During the EMG was the second. When he placed the needle into my arm, I don’t recall him leaving it in stationary for very long (if at all) before having me contract the muscle. Almost the entire time the EMG machine sounded like it was going to take off and was loud. For instance, when he placed the needle in the base of my thumb, he stuck it in, then almost instantly had me push my thumb up and put pressure on his hand. I will add that he did spend what seemed like a lot of time on my smaller calf. He had the entire needle fully inserted into my calf for actual minutes. He then pulled it out, looked at my other calf, and just stuck it in. I didn’t get a print out or anything of the results. He just looked at me and said “you have very strong muscles, it kind of gave me a hard time, but you don’t have any MND. You do have radiculopathy at your S1 which I want an mri of”. Does this sound like a normal EMG experience? This Neurologist isn’t young. He also didn’t EMG my neck or under chin/tongue.

During the NCS of the EMG the technician (supposed 20 year specialist doing EMGs) told me that she would know is something was wrong within minutes. She advised that during her 17 years of NCS/EMG she has had MND patients (the youngest being 44) and that during the NCS things just stand out. She said this after I expressed my fears to her. Did she just say this or is there any truth to that? During none of my research have I found evidence that a NCS is used to diagnose MND. Thoughts?

Thank you for your priceless and most appreciated time and answers.
 
Hi there-

Sorry your internet searches have brought you here and contributed to your anxiety about ALS needlessly.

Straight up, you spend half your post questioning the examination technique, experience and veracity of the medical specialists you've seen. This strikes me as a pretty unhealthy approach to things and a sign you have some runaway anxiety. It's not clear what the trouble is, but you've absolutely been cleared of ALS by people who are trained to detect it. The people here would absolutely not contradict that. This is not a dismissal of your symptoms- but you certainly don't belong here.

I really hope you're able to leave your fears of ALS behind while you work with your gp to figure out what is going on.

Take care
 
I agree that ALS is not on the table. But as regards your issues and concerns, you have the right to a report of the EMG findings and those of any other tests. That might form a more solid basis for your discussion with your PCP.

All the best.
 
ThankYouAll... "Thank you for your priceless and most appreciated time and answers."

There... you got it. Copy and print out your post above and let your PCP read it over.

Hope he/she can help you. Pretty much done here. This is an ALS web site which you've
been cleared of. If you don't believe it... copy and print it out and let your Neuro read it
over. See how that goes.
 
Are you an MD? You're questioning the step by step methods and "supposed experience "of trained professionals. If you're an MD, do you approach patient meetings in the way you describe? Sorry, just trying to understand the basis of your fears.

Your symptoms are absolutely nothing like those of ALS. Believe it or not, that's your choice.
 
Thank you for such a quick response and taking the time to answer.
 
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