Down the ALS rabbit hole

[Hypo84]

I haven't been afraid of ALS for 10 years. Back then I was 28 and experienced twitching for the first time. This time, 38 and I started having non stop twitching last January in my eyelid and biceps and occasionally in some other muscles.

I haven't paid much attention to this even though it was constant but I developed chronic hoarseness in the last 2.5 months so I started connecting it to fasciculations and also I sterted getting some involuntary gasps which I saw being mentioned on ALS forum as well.

I went to ENT 1.5 months ago and he just that my vocal cords are not shiny but blurry and to rest my voice. Since the issue continued, along with other symptoms and the case study which I have found that ALS can start with hoarseness that doesn't go away led me down this rabbit hole.

[nomorepanic]

Hi

This is just a courtesy reply to let you know that your post was moved from its original place to a sub-forum that is more relevant to your issue.

This is nothing personal - it just enables us to keep posts about the same problems in the relevant forums so other members with any experience with the issues can find them more easily.

Please also read this post:

http://www.nomorepanic.co.uk/showthread.php?t=213239

[ServerError]

You tracked down a case study that seems to fit the anxious narrative in your head. That's very much the anxiety demon taking charge. I personally think, if I wanted to, I could find a case study somewhere that convinces me I have just about any illness or disease. A random case study means nothing for an unconnected random individual though. If you're engaged in behaviours such as seeking reassurance or information online, that's behaviour that needs addressing. I'm sure deep down you know that that case study means nothing for you really.

[Hypo84]

When to ENT today. My vocal cords are fine so that invalidates my fear of bulbar ALS onset.
I'll have to find a new rare onset, like respiratory or smth

[Fishmanpa]

When to ENT today. My vocal cords are fine so that invalidates my fear of bulbar ALS onset.
I'll have to find a new rare onset, like respiratory or smth

Why?

FMP

[Hypo84]

It was a sarcasm . I am fine now after the doctor's visit.

Thank you

[Fishmanpa]

It was a sarcasm . I am fine now after the doctor's visit.

Thank you

Glad to hear that!

FMP

[Zuzinada]

Hi, I was just wondering how are you doing now?...
My biceps also twitches on and off for about 6 weeks now.
Also the same as you I have occacional twitches all over my body too.
Have your arm twitches stopped or you dont bother about them anymore?

[Hypo84]

Oh, I am still bothered. My biceps twitches non-stop for a year now, and my eyelid on/off since last New Year (15 months). I also now have back twitches, on/off shoulder twitches, quadriceps twitches etc.

I am still hoarse, and I also started getting mid back spasm pain and pins/needles in the back.

And I do know that ALS is a motor neuron, not a sensory disease, but still, my brain is telling me that my back muscles have spasms due to weakness and they are pinching the nerve which causes pins/needles and that my muscles around vocal cords or vocal cords themselves are getting weaker so that is why I lose my voice so quickly. And again, I know how unlikely is to have a bulbar onset with hoarseness and then get back spasm which have nothing to do with bulbar onset...

I am functional, that's good at least.

[Fishmanpa]

At least you know its physical anxiety symptoms and not bulbar onset

FMP