Fatigue as early sign

LCalex

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Joined
May 5, 2024
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3
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Learn about ALS
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Country
IT
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Milan
Hello everyone! I’m a 25 years old M. I read the sticky post about major initial symptoms but there is one of them which I didn’t see reported although I saw it in some health sites, diagnosis stories and scientific papers which is tiredness and fatigue.

What I’m experiencing is an annoying sensation of tiredness immediately after exerting, also for a very brief period of time such as seconds, the right side limbs muscles with some of them more affected than others. It started a month ago and it progressively worsened.

This tiredness lead to a perceived sensation of weakness. I said perceived since last Tuesday I was visited by a neurologist who also specialises in neuromuscular disease and his clinical examination was negative, although he rightfully said he couldn’t exclude anything and so he gave me an EMG and brain/cervical MR examinations to do. I should have the EMG next week but what got me worried is that my symptoms worsened to the point I’m having difficulties in standing also for things like taking a shower while more dynamic activities like walking are a little less affected.

I want also to clarify that resting for some minutes helps in clearing out the tiredness but as soon I start to use the muscles I return to the starting point. I know that without any examination result it can be anything as said by my neurologist but I tend to expect the worst and when I read the definition of “reversible muscular weakness” (Gibbons CJ, Thornton EW, Young CA. The patient experience of fatigue in motor neurone disease. Front Psychol. 2013 Oct 25;4:788. doi: 10.3389/fpsyg.2013.00788. PMID: 24639657; PMCID: PMC3944139. ) to describe peripheral fatigue in ALS 2 days ago, which matched perfectly my situation, I got very worried.

I learnt that generalised onset in more than one limb is not the typical way ALS starts although it can happen, however I was curious if this kind of fatigue can precede clinical weakness indeed and if can resemble somebody’s experience. I deeply thank anyone who takes the trouble to answer my question hoping to not being rude with my (probably exaggerated) concern to anyone who is actually diagnosed with ALS since also my 18 yo brother has a very rare, life threatening pulmonary condition (he is in a heart and pulmonary transplant waiting list) and I slightly know what could mean to live with such terrible health conditions and how can affect everyday life.
 
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My experience is that fatigue is a late sign. I started with clinical weakness and felt fine. Now that the weakness has spread I am tired all the time. I think because everything is such a struggle

Absolutely nothing like what you describe

I am sorry about your brother

Good luck with the testing
 
I don't see MND in anything you describe, but certainly similarities to what people with long Covid and conditions like fibromyalgia describe. Adult-onset muscular disorders also exist.

If the neuro testing is negative, I would return to your internist for further evaluation and ask about a referral to a rheumatologist. I would also meanwhile track your sleep stages with a wearable and ask your partner or video to see if your breathing and/or movement are disordered in sleep.
 
Thank you very much for your time and advices. I will do an update when I have the EMG results which is scheduled for tomorrow.
 
Hi again. Both the RMN and EMG came back negative which relieved me of worries from a neurological point of view although the symptom still remains. I’ll start psychology support sessions hoping it can also alleviates my physical condition and then see my GP. Anyway I wanna thank you all again and wish all the best.
 
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