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MotherOfMaya

ALS fears back after a decade gone

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Hey all,

I haven't had to be here for so long and I am quite mad at myself for being back. Ten years ago what started with an eye twitch and a trip to Dr. Google ended up as body wide twitches for months on end and a terrible rabbit hole of anxiety so bad that I am not sure how I kept it together for work. I used to post on AnxietyZone before it went into the ether of internet obscurity.

Anyway, I am back here because for some dumb reason on Saturday I started to think that I was salivating more than usual and I head to the reliable old Dr. Google (no, I NEVER learn my lesson!) and it said ALS can cause this. Now I am sure that food is going up into my sinuses when I eat. I haven't sneezed out any food or blown out any food, but my mind is telling me that I can feel food pushing up past my palate. I am now seeking reassurance from several of my friends and family and I swore I would never go down this road again! Of course everyone says I am fine but my anxiety mind says that they are just saying that to make me feel better. I have started doing the age old checking behaviors like drinking water, eating, looking at my tongue in the mirror, talking randomly to hear how I sound, etc. 

Someone please talk me off this ledge before I jump into the deep end! 

Thanks so much!

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Don’t stress your okay—— I just posted about this too. This fear. Salivating isn’t the problem. You feel like your salivating with that horrible disease because your muscles are working and you can’t swallow. This isn’t you. This isn’t us. Let it go. I’ve been doing well for a few months and I’ll get a twitch or drop something and my mind freaks. Anxiety- not als!!!

hugs! 

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And when I was at the height of my fear all my “symptoms “ were worse. Thinking about automatic body processes makes them Not automatic- and causes problems. Like me, when I drop one thing I drop ten because I get worried and focus on my hands so much. Let it go! I’m sorry you are going through this. You can overcome it! 

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Thank you for replying so quickly!

I see that you are a mom too. I feel like being the mom of small children makes everything feel even more desperate! Like, I can't leave my kids....

It's so hard to see that getting in a car every day is a gamble and life is never certain.

I know you're totally right about thinking too much about these things that we don't normally think about...it makes everything feel wrong! 

I am totally pissed at myself for letting myself start down this road again.

What have you found to be most useful to "forget" to to focus on things like swallowing?

 

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Yes, 6, 3, and 1🥰🥰🥰

I make myself super busy. The more I do, the more I forget about my mind making up this stuff. After sooo many days, months, ect I realize i would be really badly off right now because the disease is very progressive and quick. People who have this don’t wonder , they literally cannot do things. I pray. I throw myself into my family and use my energy to appreciate them instead of catastrophically obsessing over something I don’t have. I eat lots of antioxidants and good food to stay healthy. You can do it!!! 

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It's been so hard to keep busy with all the covid crap going on. I am going on 11 months working from home full time and I have a 6 and 3 year old. The 6  year old is thankfully in school in-person full time but my three year old is home with me most days. I send him to daycare twice a week just to get some quiet time to work. I would love to be getting out and doing stuff with the kids but with winter and covid that's all on hold. I guess I will try and remind myself that "this too shall pass." I can ALWAYS find something to clean, which definitely helps clear my mind. 

I did just find a very old thread with a link to a great stickied thread on NoMorePanic which has been super helpful and I will probably read it every day. 🙂

Thanks again for your posts!

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You're still at the black holes edge, where it's pull is the least strong. Break free now! You lnow the drill: stop body checks, Internet checks, and make yourself busy. When a thought pops up, dismiss it at once, when a twitch comes about ignore it altogether. It's now! 

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Thanks Zen....I am teetering there on the edge of the abyss. I was feeling pretty good this morning but then I inhaled coffee when I took a sip and then went to speak and now I am spiraling. I'm sitting here freaking out when I should be working. I seriously feel like when I swallow my spit is going up into my upper throat/sinus area. I'm seriously freaked out. Can anyone talk me off the ledge??

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19 minutes ago, MotherOfMaya said:

Thanks Zen....I am teetering there on the edge of the abyss. I was feeling pretty good this morning but then I inhaled coffee when I took a sip and then went to speak and now I am spiraling. I'm sitting here freaking out when I should be working. I seriously feel like when I swallow my spit is going up into my upper throat/sinus area. I'm seriously freaked out. Can anyone talk me off the ledge??

You're in a state of hyper vigilance. Your brain is now self tricking itself into seeing sinister omens in things it would normally pass by without even noticing. A sore throat? Tracheal paralysis setting in. A spasm in the hand? Lower motoneuron damage showing. And that dent on the quads, I bet you're positive it wasn't there a month ago. And that left calf, isn't it slightly thinner than its right-side counterpart? Sure, we're not symmetrical, but it still, why does it appear smaller? Let's test the strength shall we? How come you're one push-up short from your record? Let's try again, and it's 2 reps less than your standard set. So there it is eventually, the fate sealer, the dreaded token, the clinical weakness... 

Sounds familiar? Well it sure is. We've all been there and will be again at one point. 

Break the spiral. Stop feeding the beast. Take action. Ignore. Ignore. Let your body twitch, your throat be sore and your tour push-up record be less stellar than usual. Let your body be alive and move on. 

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Try to remember ALS is an extremely rare disease with only around 5,600 cases per year diagnosed in the USA, according to the ALS Association. Compare that number with heart disease and cancer and their is no comparison. 

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I have an eye twitch that comes with anxiety.  Annoying, yes, but ALS?  No. 

There is a LOT more to the disease than an eye twitch or lethargy. 

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