My ALS fears

[Fishmanpa]

ALS is about "failing" not "feeling".

Positive thoughts

[atl]

Clever Little Viper,

Thank you very much for that reality check I needed that. I will definitely ask my doctor about something to help with my fears. You're right, it's out of control at the moment and I'm not enjoying life. It's terrible.

ATL

[atl]

I wish I could take some of my own advice but when I was testing tonight I found that I could tap a little harder with my left index finger than my right one when my hands were flat on the table. And I had more range of motion in it too. This has led to a anxiety spiral, and now I can’t sleep at all. Doing tons of searches about it and freaking out.

[Jett81013]

ATL - i'm in the same boat as you....but from an objective stance, you need to stop searching...at least for negative stuff.

Like me, if you can't stay off the internet, maybe just start looking at old postings on aboutbfs.com and other stuff that point away from the dreaded disase

[melfish]

Firstly, I want to say I totally get your fear. I'm in the midst of something similar. But you've got to stop the self-testing. It's not reliable and these compulsions are just reinforcing your anxiety. Also, coming on to a HA forum, and sharing about these tests is not helpful to other people going through the same fear who may not have known about them. STOP googling, stop self-testing. You know they're not valid unless performed or interpreted by a neuro anyhow.

---------- Post added at 09:50 ---------- Previous post was at 08:27 ----------

Also, you really shouldn't be posting this stuff on the ALS forums. It's disrespectful, imo. These are questions for your doctor, not people dying from ALS.

[Fishmanpa]

you really shouldn't be posting this stuff on the ALS forums. It's disrespectful, imo. These are questions for your doctor, not people dying from ALS.

AMEN! There are several members that have posted there and the patience they have is amazing to a point. Most are banned in short order.

Positive thoughts

[melfish]

Dude! You seriously went on the ALS forum to complain you couldn't do the Star Trek sign as well with one hand as the other. Some of these people type using eye-gaze technology. You need to stay away from there.

[atl]

Ugh. I know. That’s terrible. I’m embarrassed. It was an awful night. I spend hours alternating heavy objects like Big books holding them between my thumb and ring finger on each hand, realizing I couldn’t hold as much weight on my right side.

[melfish]

I've had those nights too. And I know that in moments like that, you can't see any way out of it but the inevitable diagnosis. I've been struggling with my own ALS fear for five months now. I read those boards too and they fill me with terror, so I try to stay away. No good can come of it. Ultimately, if we have what we fear, no amount of reassurance or nights spent poring over old posts is going to change anything. And the more you google and self-test, the more you will find to validate your fear. It's a vicious circle, and one that needs to be broken. I have no magic answers, but I know what makes it worse.

[atl]

Thank you. You’re totally right. I appreciate the pep talk. Here’s to no more checking.

It’s so hard though because your hands are ALWAYS right there, to not check.

The best few days I’ve had recently are days when I’ve been able to accept the possibility that I might have this and I had a plan of what to do if I did and I didn’t feel so helpless.