22 Y/O M. Should I be worried about symptoms?

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BillNye

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Hi all, I'm very thankful to everyone here for their valuable time. I'll preface this by saying that I know my odds of ALS are extremely low for my age. I wanted to know if 1) my story seems concerning to you, and 2) what to figure out from a neurologist about this. I know I do have anxiety, and I think it affects some of the other symptoms I've been having, such as my episodes of lightheadedness, heart palpitations, and GI problems which I know ALS does not cause.

Starting 10 weeks ago I started episodes of perceived weakness/tingling on the left side of my body, especially my face and arm which lasted an hour or less. It eventually affected all my limbs and I had the feeling of being very heavy- it felt very tiring to move any of my limbs for much of the day. Urgent care doctors at the time ran blood tests which were all clear and told me that Long Covid is the most likely cause (I tested positive for Covid a week after the initial episode). After 5-6 weeks it seemed to start improving slowly, and I genuinely thought this was behind me.

About 2-3 weeks ago, I woke up with perceived weakness/trembling in my left hand, especially around 2 fingers (Pinky and Ring). The next day, this feeling spread to my other fingers, wrist, elbow, and my shoulder. My hand feels a lot less maneuverable, my left arm feels a lot harder to lift up, and it's more comfortable just to let my arm lie limp than move it. The strength is still there but there's on-off discomfort especially in my shoulder, but also my bicep & forearm (twitching, stiffness, burning). The hand clumsiness makes it feel harder to write/type, which is very scary.

Almost immediately after, I also developed perceived weakness in my legs, especially the left. In my left leg, the weakness is especially noticeable around my knee, ankle, and calf. I can do all the typical tests but feel off-balance. The feeling of weakness/heaviness is persistent throughout the day and night. I also can have twitching all over at rest and a full-body "vibrating" sensation that often wakes me up at night. To top it all off, I recently had difficulty initiating swallowing. I've had swallowing problems in the past due to acid reflux, but never with initiating swallowing and the timing of it with my other symptoms scares me.

I went to 2 doctors and a PT, none of whom have found any clinical weakness, but can't find an explanation for my symptoms either. Muscle inflammation has been suggested but doesn't explain everything. I'm waiting on MRI results, but my X-rays are normal. My PT has said that my reflexes/strength seems fine but that I don't seem to have a pinched nerve and he can't figure out what's wrong with me. Hoffman's and Babinksi were negative. My doctor believes that this is a mixture of Post-Covid & anxiety, but he's at least referring me to see a neurologist next week.

The rapidity of progression and breadth of symptoms is what's concerning me. Please let me know what you all think. Thank you all again!
 
No harm in seeing a neuro but based on what you report, your PCP may be on point. Don't waste time worrying till then.
 
Certainly sounds like something other than ALS, which does not happen rapidly and across all those areas. It is a disease that starts in the brain and works down your spinal column to the muscles that make you move. You are describing something quite different.
All the best!
 
Thank you both for your kind responses. The MRI results came in and are normal. I am trying my best not to worry, but so many symptoms at the same time really worries me that this is something neurological. Today, I actually even saw tongue twitching (which another person could see when I opened my mouth), and a feeling like my tongue was "tired" (but my speech isn't slurred).

All of these issues together and in such rapid progression is really worrying me, even if I don't have clinical weakness. I know ALS doesn't usually happen this fast, which makes me worried if I've actually just had symptoms for months and maybe never really noticed.

What would be the best way to question a neuro to figure this all out?
 
Tell them your symptoms and ask what is wrong. Don’t try to direct them. If you say is this als they can say no and that could be all
 
"Something neurological" doesn't even begin to equal ALS.
I'm pretty sure you don't have a medical degree at 22, so please stop trying to fit yourself into a rare terminal disease that normally affect older people. The more you read, the more you will convince yourself of something that is not true.
Did you know that most neurological conditions can be cured, treated or controlled for life?
As Nikki suggests, let the doctors do the work, that is what they trained for and have experience in doing.
All you have to do is tell your symptoms once. They will then do a clinical exam which they understand how to do, and from there decide what, if any further testing is needed.
 
Thank you all for the invaluable advice. Told everything and had a good meeting with the neurologist yesterday, who ran a bunch of physical exams that she called reassuring, and promised me it's not ALS, but more likely something autoimmune-related and treatable. EMG and other tests are scheduled in the following months- thank you all again!
 
Hi all, wanted to thank everyone again and give a quick update. Over the past 6 weeks, I've received 2 more MRIs and many blood tests, all of which have come back clean. This ruled out my neuro's possible explanation for what's happening (an autoimmune condition or MS). While this is good news and pushes me to lean towards post-Covid as the cause, I haven't done the EMG yet which is making me a bit worried.

My concern is that many symptoms don't appear to be subsiding, and in some ways continue to persist/worsen. Right now, I'm still experiencing perceived weakness in both arms and hands plus minor clumsiness/balance issues as well. More scary is my feeling like it's difficult to talk normally, with a sore jaw and 'tired' tongue feeling (I also keep missing words or mispronouncing them, but still no slurring and I sound the same to others). I don't know if these are common post-Covid symptoms.

On the other hand, I know that fatigue/brain fog/memory recall, which I'm also experiencing, are definitely Long Covid symptoms. My question is this- now that my neuro's likely diagnoses have been ruled out, but I'm still experiencing symptoms how worried should I be about the EMG?
 
If I were you, I'd be looking forward to it as a possible source of both information and reassurance. While you have been reassured about MND/ALS not being the source of your issues, an EMG can indicate/rule out other issues too. EMGs are not just to look for signs of ALS.
 
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My nephew experienced the same symptoms from long Covid. He was only 17 and contracted it before the vaccines were available. He's now 19 and still has residual issues.

I wouldn't worry about the EMG. If your neuro wants you to get an EMG, get one.
 
While I can see you are worried, these continuing symptoms still don't indicate ALS.
Long Covid is an awful condition and I hope you can get back to health over the next months.
 
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