My ALS fears

[melfish]

Look, I get it. My fear is bulbar onset, so I am a compulsive tongue/swallow/speech checker. (That's not to say I don't worry about that twitch in my left thumb or the size of my thenar muscles etc etc ).

It's a terrible, terrible state to be in. But I try to remind myself that even if ALS does start out with subtle sighs, it doesn't stay that way for long. It announces itself. There's no need for us to hunt it down. You've probably read enough posts on the DIHALS board to be able to tell the HA sufferers from those who turn out to have early ALS. And interestingly, the latter are usually the calmest.

Hang in there, time is our friend.

[atl]

It's so true, those folks who are actually diagnosed on DIHALS are pretty amazing. Calm, collected, if very frightened. I don't know how they do it. That would not be me.

Last night I finally put socks on my hands to make it harder to check haha. Yeah it isn't quiet for long – you've been going through this longer than I, but it's been almost 2 months from me, so maybe in another few months if it doesn't get worse I'll be able to lean on that.

[melfish]

There are a lot of people here who've been down the ALS rabbit hole and come out the other side. Hopefully, they will be long to comment further and help us both a bit

[AntsyVee]

Maybe you should take up playing a woodwind instrument like clarinet or flute, Mel. Your obsessions with your mouth could really help with your embochure!

[tryingtosurvive1]

y'all don't have ALS
and yes, I can totally tell who might have ALS on the DIHALS board. Usually older people with foot drop or obvious grip problems whose doctors have told them it is possible. Or husbands/parents in denial whose worried wives/kids are posting.
No one on *this* board ever fits that profile.

---------- Post added at 19:27 ---------- Previous post was at 19:26 ----------

i do have a much milder totally genetic neuromuscular condition-CMT-that has taken awhile to fully announce itself. So I had slightly more reason than most here to read that board. Probably we should all stay away from it, though.

[melfish]

Maybe you should take up playing a woodwind instrument like clarinet or flute, Mel. Your obsessions with your mouth could really help with your embochure!

Ooh, good idea. I quite fancy the piccolo

---------- Post added at 19:44 ---------- Previous post was at 19:34 ----------

i do have a much milder totally genetic neuromuscular condition-CMT-that has taken awhile to fully announce itself. So I had slightly more reason than most here to read that board. Probably we should all stay away from it, though.

I have a friend with CMT, so am moderately familiar with it. And yes, I need to get my arse off the ALS boards (again). What a selfish condition HA is. I can barely function as a decent human with it :(

[AntsyVee]

Yes, get yourself a flute or piccolo. New hobbies also help manage and keep the mind off anxiety.

[atl]

I worked out today, so of course my twitching has increased. Usually after working out it’s in my calfs but this time it’s in my feet. Both, but a little more frequent in my right on which is on my “bad” side. And then while watching the twitches I noticed I have a couple things indentations on my right foot that aren’t there or aren’t as pronounced on my left.

Since my symptoms are right side (hand and leg) now I’m worrying about a brain tumor with my sensations of a lack of coordination.

Argh. This freaking thing. I really hope I can sleep tonight.

[AntsyVee]

Muscle twitching after exercise is extremely common. It happens to everyone.

[MyNameIsTerry]

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.

Funnily enough one technique in therapy is to agree you have something. It's to come up with a plan if something happens to prove to yourself it's not so bad.

So much in anxiety is reaction. The more you panic, the more the subconscious sees it's important to you and keeps building on. So by agreeing you remove the panic reaction and re frame the issue as not so bad. Ultimately it's not about brainwashing yourself into believing you have it, just a way to neutralise the cycle.

You might come across it on here when others talk about how their therapist has them imagining they had cancer and how would you cope.

The thing is, a lot of this is about the foundations of most forms of anxiety - fear of lack of control and uncertainty. When we take control we empower ourselves and get on with something because we want to rather than being pushed into it with our feet scraping along the floor.

I'm not a HAer but I've had the muscle weakness, joint aches, pins & needles (a form of paraesthesia), aches, etc. Transdermal magnesium helped me with much of this and so does exercise.

Anxiety puts your body under a lot of strain and we need more nutrients because we are burning through them quicker than normal. I've had breakdowns & relapses and you would be surprised how quick you find yourself struggling just to walk up the street when you get back outside after months of doing nothing. But then ask anyone who's broken a bone, the muscle quickly reduces and that's why we have physiotherapy to address it.

So why not try to address issues like strengthening those muscles? Why not try to bath or relax with remedies aimed at helping tired muscles & joints?

As for checking compulsions, look to ERP to show you how to reduce them steadily in a realistic manner. My OCD was very heavy on checking/touching and at the height of it it was hundreds of times a day on many items including my body. It took me some time to stop them all but they are long gone now.

There are ways to cut down those checks, re frame them to dispell the cycle or insert waiting times or other activities. OCD resources will give you all this, it's standard stuff in OCD circles.