Officially panicking - ALS

[enidoreilley 83]

I've been doing a good job of squashing my ALS fears these last few months as I've noticed very occasional breathing/speaking/swallowing issues, but it's just exploded for me in the last 24 hours and I spent all night crying and refusing to speak. I think I can feel soft palate inadequacy. It's called velopharyngeal dysfunction and it's really just associated with a few structural issues that are much more common in kids and motor neuron disease. I am beyond panicking. I am crying for my son who won't have a mother and fearful because I won't let anyone spend money on my care. 

Help. I appreciate anything anyone can contribute. I have a background in ALS fears and spent a very long time convinced I had limb-onset ALS, until a clean EMG showed I did not. I am a teacher and have a lot of stress about next year, both for me and my son. I generally feel ok and everyone I know says I am not slurring my speech at all, but I can feel it. 

[PennyPanic 265]

I'm in my own personal hell spiral right now....over something else. I see you are there as well. I'm sorry about that, truly. Spiraling is dreadful. I don't wish it on anyone. I can't help but wonder for both you and me, (and others) if spirals are a coping mechanism...a way to concentrate on something other than what is bothering us for real. You mentioned having a lot of stress about the next school year. That's more than understandable as a parent and a teacher. I mean who isn't freaked out right now and as an educator and parent that's a double whammy. Is it possible that it's easier to worry about ALS  than what happens next year? Just a thought....something I'm thinking over myself as well...to see if I can stop my own awful spiral. Sometimes ...esp in the middle of a spiral...it's difficult to discern what's truth and what isn't. Anyway, sit with that for a while and I'd be interested in learning what conclusion you come to....it might help us all. Hang in there.

[Holls 1496]

On 7/14/2020 at 10:30 AM, enidoreilley said:

I've been doing a good job of squashing my ALS fears these last few months as I've noticed very occasional breathing/speaking/swallowing issues, but it's just exploded for me in the last 24 hours and I spent all night crying and refusing to speak. I think I can feel soft palate inadequacy. It's called velopharyngeal dysfunction and it's really just associated with a few structural issues that are much more common in kids and motor neuron disease. I am beyond panicking. I am crying for my son who won't have a mother and fearful because I won't let anyone spend money on my care. 

Help. I appreciate anything anyone can contribute. I have a background in ALS fears and spent a very long time convinced I had limb-onset ALS, until a clean EMG showed I did not. I am a teacher and have a lot of stress about next year, both for me and my son. I generally feel ok and everyone I know says I am not slurring my speech at all, but I can feel it. 

Oh yikes... I went down the bulbar hole and it was a deep deep one..you have a history of als worry so of course you are overanalyzing your body and your true anxiety is about school starting . But it latches on to an old fear... Dreaded ALS.. you don't have als. You have anxiety about Als. Hugs hun, you are okay. By the way, thank you for being a teacher. 

You are absolutely fine. 

[Ellebel 66]

Time will heal this fear also.. stay strong ❤️

[MARC 416]

ALS cases per year in the USA, less then 20,000. Cancer cases per year in the USA over 1.7 million. ALS is a very rare disease. I once worried about carcinoid syndrome as I knew 2 people who had it. When I asked my physician about it, he said I have a better chance of being struck by lightning.