Could this be ALS/MND?

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DannyD1996

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Hello everyone! First of all I would like to offer my sincerest respect for all members of the forum. Going through the threads has me deeply humbled by the support you all offer here and was hoping you could share your advise with the symptoms I am experiencing. For context, I am a 24 year old male. Here is a timeline of my symptoms.

December 2020: I begin experiencing lower back pain and over the course of a few days, a discomfort appears appears in my left leg. I can only describe it as a "tight" and "weak" feeling.

January 2021: I begin to see my doctors. Blood work is done, everything is well. I am sent over to the Orthopedic. I begin a month long session of physical therapy as the cause of the pain and discomfort could have been done by inactivity (I am an accountant, so I sit all day and lack of exercise from a year-long lockdown didn't help much).

March 2021: Physical therapy didn't work, so doctor orders a lower back MRI, unfortunately this gets declined by my insurance so I never got this done.

April-June 2021: I begin to see my Neurologist, have a brain MRI which comes back clean. Late June I walk into my Neurologist's office and find out I'm having an EMG & Needle exam done in my legs. Doctor tells me right after that everything is ok, just take over the counter medication.

July 2021: This is the month that started to get me worried. The same discomfort that has persisted on my left leg now copied itself to my right leg as well as my left arm. My left arm specifically started with some "weakness" and tingling in the fingers (I say "weakness" in quotes as they are not actually weak, but feel sluggish). Tingling lasted lasted a few days and what remains now is the same feeling as my legs. Frustrated that I still feel horrible and it's already been 7 months, I begin Googling my symptoms and behold, I come upon ALS/MND. I start connecting the dots with my symptoms and enter panic mode. Over the course of the last few weeks I have been extremely scared and anxious, lurking forum threads, finding different and similar cases, etc. The icing on the cake was a week and a half ago when my left cheek starting feeling tight, and then so did my neck, and now I am experiencing a feeling of a ball in my neck, with a little bit of a discomfort when swallowing near the back of my throat. I want to mark this up as anxiety, but it feels too real to just consider it that.

Which leads me to where I am today. I am still experiencing all these symptoms. Once they arrived, they never really go away. They're there when I walk, lay down, etc. Now that ALS/MND has been brought to my attention thanks to the Internet, I cannot stop thinking about it, and it really has taken a toll on me. I study less, work less, eat less, worry more. Some things I would like to note is that there is no actual weakness in my limbs. I can still move about, full range of motion, lift some weights in the backyard, but that sore, tight feeling never goes away, and now with my throat pain and ball feeling, my anxiety is off the roof. I have been paying attention to my body more than ever. Every step, every twitch, everything. I intend to go to the urgent care later today regarding my throat issue, and I have also made an appointment with my neuro for next week to discuss ALS/MND as that really wasn't on my radar until recently.

Based on what has occurred with me, what do you guys think? From what I have read, my symptoms seems to be more in line with upper motor onset. The sticky mentioned that some diagnosed claim that the EMG was clean, but that's because they experienced upper motor symptoms. Could my EMG have missed it because of that? Am I experiencing actual symptoms at all? Do you advise I go for a second opinion, just for peace of mind?

Sorry for the extremely long post. I had not realized it would be this long until I looked at it now, finished. Thank you for taking the time and effort to read and respond, which I know is extremely difficult for most. I appreciate any and all advise with your knowledge and experience.

Thanks again,

Dan
 

Nikki J

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People with upper motor neuron onset have abnormal clinical exams. The tightness that you read about and presumably are worried about is code for spasticity which is clearly seen by an examining clinician. If you had it they would have told you. You have an appointment next week. You can ask if you are now exhibiting umn signs. You don’t seem to be describing them but your neurologist can tell you definitively. Make a list of your concerns and questions. Also read both important posts at the top of the subforum. The one about getting a diagnosis helps you prepare for doctor visits.
 

affected

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It is the heart of the problem when people with no medical training google symptoms.
You googled weakness and found ALS and went 'bingo I'm dying'.
And yet this is a quote of your words: "I say "weakness" in quotes as they are not actually weak, but feel sluggish"

Please read the post I've linked to below, as we so clearly say there and in all the threads you have been reading: PALS feel no different, they simply have failure of muscles, they suddenly can't do things and THAT is clinical weakness.

Please work with your doctors, Nikki gives great advice how to approach them with lists of concerns. I truly hope they figure this out soon, but you are not describing ALS.

 

sassy

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Adding to Tillie's post regarding weakness. My husband felt fine but kept tripping . Our daughter worked in an ALS academic lab and when I told her I thought her dad had foot drop she asked him to tap his foot. Much to our surprise he couldn't do it. That started the process to diagnosis.
 

DannyD1996

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Thank you all for your quick response. I saw them right away but refrained from responding as I've been distancing away from the Internet a little bit. But I appreciate the insight you all gave!

Unfortunately I haven't really gotten much better. Since I last posted a few days ago, I've been experiencing some concerning twitches/fasciculations. They're not in my entire body, they are in my little muscle between my thumb and index finger in my left hand. Sometimes they are visible, but all the other time they are beneath the skin (I can feel them by pressing the area with my fingers). The other is in my stomach/abdomen, which is going insane. Looks it has it's own heart in there. Like all my other symptoms, once they appeared, they haven't gone away. The twitches in my stomach particularly make it very hard to sleep.

I did go to the hospital for my swallowing issues, where they ran some brain and neck scans, all good. Turns out I have tonsillitis. Been taking some medicine they prescribed but, still feel the trouble swallowing. Was referred over to an ENT for this one.

Very anxious and nervous for this upcoming neuro visit, specially with all my new developments. My symptoms are now looking like this as they appeared: 6 months of lower back and left leg tightness/soreness, 1 month of right leg and left arm soreness, tight left cheek with now some difficulty swallowing and twitching in left hand and abdomen.

I have taken your advice to heart, prepared some questions for my doctor. Seeing him this Wednesday, hoping everything turns out ok! Thanks again.
 

affected

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Let us know the outcome of your doctor, but adding more twitches here will not make us worry. Twitching means nothing, so take a deep breath and wait until you have doctors advice.
 
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