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lostboy

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First of all, I just want to say I couldn't thank you guys enough for your precious time.
I've been lurking for a month or so, and I can see this forum is full of awesome, helping people.
Real life heroes.
I might be in the process of joining the club though.
Now, I don't want to disclose any personal details about me (not right now), just know
I'm a young male (in his 20's) whose primary language isn't English.
Long story short, I've been dealing with some sh*t throughout the last 3 and half months, and the indicatives of ALS are showing (up with some other strange symptoms such as unexplainable chills, mild paresthesia etc.).
I have, to some degree, most of every Lower and Upper Neuron symptoms.
I'd say I don't show a Babinski sign yet, and some other symptoms aren't strict as the classic ones (Fasciculations all over my calves, but somehow widespread throughout whole body. Weakness being episodic. Apparent atrophy being symmetric)
My neuro had me do a MRI and an EMG. The MRI was clean.
The EMG had "myopathic findings" (The best way I can describe the sound the machine made is a low, somehow chaotic one).
This was in my proximal muscles, which happen to be somehow weak.
The doctor who performed the EMG said I probably have myopathy and that was it.
I don't trust his possible diagnosed at all (Besides all of my Upper and Lower Neuron symptoms,
there are issues regarding his professional conduct as well, but I'm not entering in details about this).
Going back to my neuro with the EMG results, he said they were a relief ("he was/is actually thinking I do have ALS afterall", I thought).
When I confronted him about my fascics, he said they could be from the myopathy.
I'm finding it hard to believe.
He's now refering me to a muscle doctor, next steps being (more) blood tests and a muscle biopsy.

My main questions are:

1- During the early stages of ALS, since reinnervation do occur, could that somehow explain my unstable symptoms?

2- Is my neuro really thinking I have myopathy instead of ALS, or just giving me false hope? (inb4 You guys can't read his mind. Just give me your opinions :p)

3- I've had episodes of tinnitus and possible hearing loss without any apperent reason. (My hearing faded a little just as I was typing this). Since ALS don't present itself along with sensorial loss, I'm considering this could be some sort of mitochondrial disease instead?

Also, sorry for the wall of text. I guess I just wanted to vent. I am, as everybody else here once were, in a limbo.
Thanks again for your consideration and time.
 

affected

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Hi lostboy,
now I'm no doctor, but I do know ALS fairly well.

I've read your post very carefully (your english is great), and I just can't see any signs of ALS in what you have told us.

Your EMG sounds like it found myopathy and this is great news and it does seem to fit what you have happening.

I hope the biopsy gives you a much clearer indication.
 

lostboy

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Thank you for the kind answer, Queen.
I'm looking forward to the biopsy and blood tests.
Just one question regarding the biopsy: is there a remote chance of them taking a piece of muscle which is still healthy, so that the results are biased?
It baffles me how the EMG didn't show up any fasciculation potentials? Just because I wasn't twitching at the time? (Again, I don't trust the doctor who performed the EMG that much, so this is a puzzle for me)
And I'll be seeing an otolaryngologist, I think my hearing is getting worse.
Take care.
 

Atsugi

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Lostboy, I didn't see ALS in your description. You didn't mention profound, permanent weakness, which is the hallmark of ALS.

The chills and your hearing have nothing to do with ALS.

If you don't trust your doctor, get another one.
 
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