Desperate please help me understand if this is ALS

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DannyO

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Hello. I have been dealing with some serious issues for 3 years already and still don't know what I am facing. Doctors don't have answers for me and I am really desperate. I am pretty sure I have a big majority of the ALS symptoms and since there are not many diseases with these type of symptoms it makes me worried a lot. A lot of things happened during this 3 year span so I will try to write it down and try to provide as much information as I can.

2017 - First symptoms were overall weakness from neck to legs. This was before the time I learned the difference between perceived and clinical weakness. This time it was perceived and I know clinical weakness is important when in comes to ALS and I have that now. So I went to hospital and had a basic neurological examination lot of blood tests, head and spine MRI and NCV study. All clean except NCV and neurological exam. It showed mild hyperreflexia and NCV was on the edge of being clean but doc said nothing to worry about looks like some kind of pinched nerve. Later that year fasciculations and some strength deficits have come. Basically I have these issues till now. Fascics started in thighs and quickly spread to the entire body. I absolved my first EMG where fasciculations were present along with some mild polyphasic potentials. Got a diagnosis of BFS but I don't think it is BFS thanks to other symptoms. I have no idea what this means till this day since no one really explained it to me. Shortly after the fascics weakness was knocking on door. Basically I could describe it as losing strength, I cannot cycle for long periods of time because my muscles will get super exhausted and tired and shaky after shorter distances. I used to cycle a lot every year and never had a single problem. Same goes for gym and weight lifting and running. My muscles suddenly become very weak and stiff and I have to take a rest. This has never happened before.

2018 - Noticed atrophy for the first time. My left thigh was way smaller than right. Not sure what the muscle on the side of thigh is called but it was suddenly missing on my left thigh while I could clearly see it on the right side. Only thing I could see on my left muscle was a huge dent on the side and a huge asymmetry now. Also my quadriceps was smaller when flexing the muscle compared to the right side. Later that year after a workout rear part of my left thigh was really weak and I found out my hamstring is partly missing. Visited a doctor once more. Told him about the atrophy and fascics. So he performed a basic neuro examination and strength tests. My strength was very good and neuro exam revealed the same hyperreflexia like last year. All blood tests, MRIs were good and NCV and EMG had very similar findings like the first time (polyphasic potentials) and basically I was told that more energy is required to make the muscle work than normally. Not sure if this is denervation or not. But since it did not show something specific no one really cared about my atrophy and muscle fatigue

2019 - Now I noticed atrophy on multiple parts of my body and all of it is on the left side. My left deltoid is missing some muscle mas for sure compared to right. Triceps and biceps are smaller when flexing (this could be because my right side is dominant but I cannot tell for sure), my forearm has visible dents when flexing and is way weaker than right, thenar muscle and muscles around thumb are way smaller and weak after using them for some time compared to right. It is definitely not just asymmetry because my left side gets tired way more faster than right. For instance I was trying to lift weights in gym and while my right hand could do 40 reps my left felt weak after first 10 reps and my muscles suddenly gave up after 20 reps and I could not move that hand for next hour or so. Also using my thumb for extended periods of time resulted in 90% loss of movement in the thumb because of the weakness. This is clinical weakness for sure. Another hospital visit, got another round of MRIs, blood tests, genetic test and spinal tap. All clear. EMG was same as last year so I knew the doc is going to tell me I can see the fascics accompanied by polyphasic potentials and basically more energy is required to move the muscle. No one was really interested in that atrophy since there no bad or specific results and and I am "technically" a healthy person.

2020 - And here I am now. Left side of the body is atrophied, fortunately I havent seen worsening since last time, I cannot do a lot of sports and physical activity because my muscles will get really tired and will eventually give up and I twitch like crazy all over. All blood tests, MRIs, spinal taps are good but that freaking EMG is dirty and I dont really know what is going on since docs do not take me seriously because of my young age and contribute my problems to mental problems like anxiety depression and stress. I am only 21 years old and did not write it in beginning on purpose because "it is not possible to have ALS at young age". I was reading about juvenile type of ALS which affects patients younger than 25 years old and usually has slower progression and onset can be 6 years. This is what worries me the most, that I will slowly lose strength and get a proper diagnosis after these 6 years. And there are plenty of patients around 25-27. So I have few simple questions. Does ALS present like this? Like starts in one side of body and then moves to other side because my entire left side is affected with muscle loss. Another questions what are polyphasic potentials and what causes that more energy is required to make the muscle work. Also in my opinion BFS does not have muscle loss and clinical weakness like in my case so I think I can rule out BFS by myself, what is your opinion on this. Is there a chance that all of this is really from excessive amount of stress and anxiety? Because I was and possibly am a really stressful and anxious person since I was a child and I was dealing with lot of serious stuff in my short life so ALS would be just another challenge life would give me. But I secretly hope this is not the case. Thanks for your help and time in advance :)
 

KarenNWendyn

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Please read this if you have not already done so

I don’t think you have ALS. Your presentation doesn’t suggest it.
However there are many other conditions that can cause atrophy. The first step is to find out if a doctor confirms that you do have atrophy and true clinical weakness. Localized musculoskeletal conditions such as arthritis or injuries or even mechanical imbalance are common causes of atrophy.
Also, myopathies which are conditions that affect muscles directly without affecting the nerves can cause atrophy and weakness.

So keep working with your doctors.
 
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