Twitching and other strange symptoms

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Laurenelise

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Hello,

I am 28 years old.

4 weeks ago I experienced a knee twitch, fast forward 4 weeks, and I’m experiencing muscle twitching all over my body. I also recently noticed around the same time, I’ve been getting “wet flatulence” (never had before) which I read is a sign of nerve damage associated with ALS, called neurogenic bowel.

I did have an EMG done on my right side which was clean, and also a clean clinical. I’m just worried these were done too early, and my nerves are still in the “excitability” stage before the nerve death occurs. Other symptoms include: pins and needles, crawling and other sensations.

I also ready on an ALS forum (not this one), that some individuals with ALS had all over body twitching, and some had this for years before being diagnosed with ALS. These could have been individuals that were misdiagnosed. However, I did read some individuals with ALS did have all over twitches, they also had a dirty EMG. But again, my fear of the EMG being done too early due to twitching only being 4 weeks in, makes me feel I have no way to tell if this is BFS or early ALS.

I know I’m young, I know I don’t have weakness, I know I had a clean EMG and feel like I have no right to be here. But the fear of ALS has almost ruined my life. I’ve been hospital so many times with unbearable panic attacks. I know some individuals with ALS did have twitching first, even if it is not a common presentation so how can I tell?

Was my EMG done too early? Should I get my rectum checked too with an EMG?

I really appreciate your time and assistance. Thank you
 

lgelb

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Neurogenic bowel issues, a catch-all term so broad as to be nearly meaningless, are not a feature of ALS onset, even if that's what you have, which is a big assumption. Anxiety can play a big role in what you describe. And that, we know you have. So by googling about ALS, you are only hurting yourself, as evidenced by your hospital visits. You don't need another EMG, either.

Widespread twitching is nothing in itself, and I know you know that. Sensory issues that you describe are not related to ALS.

No one has been here with a story like yours and subsequently diagnosed with ALS.

If your bowel issues persist, and it's always worth keeping a food diary since you can become sensitive to certain foods at any age, you can consult an internist, whom you should consult in any case for a counseling referral for your health anxiety, which will only ruin your life if you let it.

Best,
Laurie
 

Laurenelise

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Hi Laurie,
Thanks kindly for taking the time to reply.
I logically know that the odds are in my favour based on my age etc.

But I guess the twitching onset was so abrupt and with no cause, very little answers online or with my GP and I guess I’m just so confused at the cause. Upon reading the threads, I can see that it’s the most common concern amongst people wondering if their symptoms match. So I guess I better live my life and try to believe I’m healthy and okay.

I was wonder if ALL over body twitching is part of ALS or if it’s more localised in ALS?
My all over twitches are still quite severe, but I’ve also been getting a strange heavy sensation in my right knee cap, it feels stiff and strange and sometimes feels weak, is this how ALS weakness starts?I’ve also been getting crazy tingling and bug crawling sensations down my legs, sometimes in my back.
Does ALS ever present this way in your experience ?

I’m sorry to come back here, it’s just hard managing the anxiety. I know my chances of having ALS are slim given my age and no family history. I do try to be logical about things, but it’s tough at times.
 
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