Als MND panic- please help me!

[jojo2316]

I have been doing better, and trying really hard, i promise. But I am really struggling today and I need to talk about here, because my family understandably get fed up. Since this thread is a couple of years old I must seem like a lost cause but I do have periods of “remission” and you guys are often responsible for those. Your “reality checks” help so so much.
Ok so here goes. I suffer from body wide twitches, especially (or maybe exclusively??) when I am worrying about MND. I worry especially much, though, when the twitches seem to be happening more in one leg than the other. Last night they were in my left thigh. So this morning I have been sucked into a quagmire of self testing and have discovered my left leg is weaker. If I stand up from a low bench using only one leg I find it MUCH easier on my right. In fact, depending on how low the bench is, I can hardly do it with my left leg. Am I being silly? Is this an irrational worry? Thank you so much in advance xxxx

[Ren-in-Black]

Hi jojo, I'm new here but my understanding is that with ALS, you wouldn't be able to use the leg at all. Which you are able to do, even though it is harder. Also I think both our arms and legs have one that is dominant and used more than the other, so would naturally be stronger. And the brain knows this when it is trying to balance the body (such as when we are using only one leg). But I do understand your feelings. I was cleared by a neuro last year but still get fearful and have doubts whenever I twitch in my left hand. Sorry you are going through this.

[jojo2316]

Thank you so much for replying Ren in Black. I have had a long term fear of als, which waxes and wanes. So I am quite familiar with strength testing. But this particular “test”, of trying to stand up one legged, it new to me. But the fact that it is MUCH easier using my right leg has sent me into a stupid spiral. I can one legged wall sit for similar times on each leg but for some reason this is really unequal.

[pulisa]

You've found a new test and you've found perceived discrepancies in your body's responses which is great news for your neuro radar but very bad news for your mental health,

We all have dominant sides but unless we have HA and are searching for anything to confirm the feared diagnosis we are usually unaware of this. How does strength testing help you to manage your HA, jojo? What benefit do you get from it?

I'm really sorry you are so tormented xxx

[jojo2316]

Dear lovely Pulisa - thank you so much for replying. You are right about everything. If I didn’t have HA I wouldn’t be testing and I would never have noticed the asymmetry. And now I have made my muscles so so sore from the exertion involved in all my hours of self “testing” that I cannot even do basic tasks like sitting down on a chair without pain and/or lowering myself down like a 90 year old. And I do feel very weak. But this weakness must surely be self induced??
But I feel so very very anxious. My brain is telling me it’s real this time (of course). My doctor says try some diazepam….. have you ever tried this? Does it work? Xxxx

[pulisa]

You are presuming "asymmetry"..so you have already convinced yourself that you have asymmetry. A neuro may take a different view?

"Hours of self-testing"..."weakness"..I'm not surprised. I'd be knackered too with all that over flexing and adrenaline.

Yes I love diazepam which I use for unbearable agitation. It works, jojo. Just takes the edge off and makes you feel more human and able to function xxx

[jojo2316]

So here I am again- and once again, no need to reply. You lot have helped me so much already. Mainly I am posting as a log to myself, because reading back over this thread is a good reality check for me. I’ve moved in lightening speed from limb onset als to bulbar onset. The twitches have given way to perceived slurring. And once again I am recording myself and convinced I am slurring. I find certain phrases difficult and then i panic and repeat and repeat the same phrase to analyse my speech. Also my mouth has started to feel tired when I eat (this one is actually a new symptom to me. But I must remind myself it came on AFTER I started worrying about als). Swallowing also feels awkward and all wrong.

[Scass]

Sending love Jojo. It’s horrible to be in the middle of a spiral. Hope you find your way out soon x


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[jojo2316]

Awwww thank you Scass. You are so kind to reply. Intellectually I can see the silliness. I mean, it’s just not at all sensible, is it, to jump from one type of MND disease to another - with an entirely new set of symptoms?
And yet the fear…… that is definitely real. It’s so annoying because I had months of wonderful remission before this severe bout of acute HA, which began in about May, I think, a month or so after I stopped meds.
This thread is really helping me though, with my self awareness…..
How are you though Scass? Are you having a good summer?
xxxx

[pulisa]

So here I am again- and once again, no need to reply. You lot have helped me so much already. Mainly I am posting as a log to myself, because reading back over this thread is a good reality check for me. I’ve moved in lightening speed from limb onset als to bulbar onset. The twitches have given way to perceived slurring. And once again I am recording myself and convinced I am slurring. I find certain phrases difficult and then i panic and repeat and repeat the same phrase to analyse my speech. Also my mouth has started to feel tired when I eat (this one is actually a new symptom to me. But I must remind myself it came on AFTER I started worrying about als). Swallowing also feels awkward and all wrong.

If you concentrate on the mechanics of swallowing it will feel all wrong. I used to concentrate on the mechanics of breathing and ended up in A&E..It's still a "weak point" of mine but I challenge it with a "what the hell does it matter?" mental shrug. True dysphagia is a different kettle of fish but you know this..Just as you know where repetitive self-testing will lead you...

Words on a screen won't convince you to stop self-testing, I know. Perceived slurring/perceived swallowing difficulties/perceived anything is all just...perceived and not clinically diagnosed. You will want to add a "yet" to that though? What would it take for you not to want to add a "yet" ..What stops you from going back to the neuro now? xxx