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1 year without proper diagnosis...possible ALS or muscle disease please help

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daniel64447
daniel64447

Hey folks

I am a 20 year old male with some strange symptoms going on for like a year. I will try to make it as short as possible. So it all started like 1 year ago when I started having strange weakness in my neck and it progressed to entire body. I found out it was perceived weakness because I could do everything it was just a little harder. Then my muscles started to twitch and they are basically twitching till now. So I went to my local neuro and she performed some basic clinical examination which was good but still sent me to hospital just in case. In hospital I had every possible examination of which everything was good except EMG. Head and spine MRI was good, every blood test was good basically everything except EMG. But neuro told me that these results are still within normal. So I was released with BFS (Benign Fasciculation syndrome) diagnosis and also was referred to a psychologist. Twitching was still going on mostly in my thighs and calves but it also occurred anywhere else in body. Then I found out I am somehow weaker. I used to do running and cycling before all of this and now I was struggling after my casual routine on bike. Well basically my muscles were fatigued much easier and faster than they should be and after running 2 miles what was normal for me in past now I am struggling after half the distance and when I finally finish it I feel like I would run a marathon and my muscles are extremely tired and shaky. Recently I managed to get another EMG and again I was told that this EMG is not clear but results are still within normal so nothing to worry about. Well I just read that medical record and i do not think this is within normal and now I am even more scared (mostly of ALS and muscle dystrophy)and I just cannot wait until I can get to my neuro to tell me what to do next. So here I am trying my luck if someone here can help me to understand these terms and what this all could be. But back to the EMG findings, there is something about polyphasic potentials and small myogenic lesion but it is within norm. My question are

  1. what does these terms mean for me?
  2. Does it signal something serious like ALS or dystrophy or some kind of myopathy?
  3. Since my diagnosis is BFS (benign fasciculation syndrome) and I am still twitching by now could this still be BFS or I was misdiagnosed?

    Every answer is really appreciated thank you 😃

0 likes, 2 replies

2 Replies

  • luther48782
    luther48782 daniel64447

    Posted

    Daniel

    It's best that you seek a Neuromuscular specialist who deals with Neuromuscular disorders.

    Too many different opinions will confuse you, and something like ALS is not always an easy diagnosis, especially for common neurologist.

    Go see the neuromuscular experts that treat those types of disorders everyday so you can get accurate answers.

  • ry1990s
    ry1990s daniel64447

    Posted

    If you have had this for a year without your symptoms getting progressively worse, I wouldn't worry about it.

    I am also a runner and was diagnosed with BFS. My calves are still twitching 3/4 month on, but the neurologist I saw (he specialised in ALS), said all my tests were normal. I also get heaviness feeling in my calves but this comes and goes, and I can still run 30-40 miles per week.

    Looks like something we will just to have to endure, unless it goes away one day 😃

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