Am I at the beginning of the diagnosis journey?

[lgelb]

By all means, tell your neuro what has changed in the last month (what has not improved may not be very helpful). But don't chain yourself meanwhile to what you think might be wrong. Better to live as if than stop living entirely.

 

[Johnster]

Hi everyone,

I wanted to give you a short update. I had an EMG I believe today (the neuro plugged a long needle in my arm and did some test).

He only did one limb even thought my legs twitch more, but he told me there is nothing, everything is normal. My brain would tell me that he didn’t test enough limbs, but I chose to stop him and believe this neuro with decades of experience.

I am happy and also wondering how can the body feel so different, with twitches and perceived weakness yet there seems to be nothing.

I’m really relieved and I hope it stays like this, I will try to forget about this and live my life.

Thank you for the support, I really appreciate the time you take to advise people like myself.

I think I will give the eye tracking device to a local ALS association, it’s the minimum I can do to pay back and contribute in a way.

 

[Nikki J]

Thank you for circling back. Twitches and perceived weakness are common with benign fasciculation syndrome.

Donating the eye gaze would be very much appreciated. Thank you

 

[Johnster]

Hi again, just checking in.

I feel better and less anxious, especially since I got cleared again by my neuro, however things don’t improve in terms of perceived weakness: every day I feel a bit worse than the last day, it’s just slightly worse, like 0,5% worse, but it doesn’t get better, just worse.

It’s affecting the whole body but I feel it the most in the legs (perceived weakness & walking feels strange) and the lower neck (stiffness)

I am doing my best to ignore the fasciculations, I know that by themselves they mean nothing.

But I am worried by this perceived weakness that keeps growing, and the fact that my fasciculation are 90% in one foot, and have recently gone up to the calf, and sometimes up the thigh, 90% one sided.

I know anxiety can do things but I’m really losing hope sometimes because it’s a lot of different things together that don’t make sense.

I am sometimes thinking my neuro should have plugged the needle in the foot or leg instead of the arm because 90% of the fasciculations are down there.

I am sorry if I am being annoying here, I just don’t know how to explain this growing weakness that I have never ever felt that way before.

The strangest thing is that I am doing good in sports for now, but when I do finer movements I feel it’s not 100% as I would like.

At this point I am just waiting, I wish this is just stress, well if you read thank you for reading and any advice is appreciated.

 

[Clearwater AL]

Johnster, you've had 18 replies.

You got cleared again by your neuro... that is great news so many here would
cherished.

You feel better and less anxious, especially since I got cleared again by my neuro,
adding to second sentence.

The strangest thing is that you are doing good in sports for now. Yet you say
your weakness is getting worse. You know anxiety can do things. Yes !

What more can our very ALS knowledgeable add? You need to leave this
forum, stop reading old threads if you are and Dr. Google too.

Please focus on getting help with your Health Anxiety. I hope you can
finally find the path to leave concerns of ALS behind soon.

Really... there's not much you can post that would change anything here.