Living in fear for almost a decade!

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Aspartus

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Hi everyone,

At the beginning I would like to say that English is not my first language.

You can skip the following sections and jump directly to the questions if you don't want to read my boring story.

My sad story in short, I'm an ALS-phobic, It's living rent free on my head for almost 10 years.. I lost all of my 20s continuesly thinking about this disease, I'm not joking!! ALS fears are now one of my usual dialy routine!!

Back in late 2018 when ai was 26 years old I was examining my tonge and my swallowing exhaustively due to severe fear of bulbar onset like sticking out my tongue in front of the mirror and trying a hard swallowing (not sure if it was due some notice or just tesring the strength) till I noticed a sudden feeling of weak swallowing reflex while I was asleep, it just woke me up! I'm not sure what exacly have I done to my self.. it developed to more serius concerns, it gradually weaken the surrounding area, my tongue got atrophied over the time and deviate towards one side it was obvious to me when I look at it in the mirror!! Also I got poor and weak tongue articulations, and hard pronounciation of certian words!

My swallowing also got affected badly, I couldn't swallow my mucus it was hard and almost impossible and it just keep stuck at back of my throat. Gurgling sound, clicking and weird swallowing muscles contraction also presented.

Last year the muscles surrounding my lower part of the face that includes my lips, and jaw got half throgh paralized!

I went to ENT 5 times and two times to internist, I was diagnose with GERD two years ago.

Finally after 3 years and 7 months I managed to visit the neurologist and I didn't told her anything regarding my fears on MNDs, she did a clinical exam and she found out some abnormalities and she pointed at my lower part of my face and she said "they're shut down and they're not working" she asks for emg, mri for cervical and xray.. at that time I coudn't continue and I freaked out and I run off of hospital!!

I went back to my home and I did some physical therapy for almost three weeks now.. and it managed to reversed most of issues but not all. My lips and jaw are strong now, my tonge is stright and no longer deviate, the atrophy is fading out but still vibrating at one specific area with an obvious dimple, some time it didn't show up. Also the tongue got stronger and almost 90%-95% healed, but the problem is that it getting back slowly to its previous state after some days

And for my swallowing issues: some times it's good and some time it's bad nearly like before but overall better..

My two questions are:

(A) if bulbar is the onset and it took me 3 years and 7 months since I expiernced this can we still concern about ALS? Or is it a slow progression since I'm 30 years old?

(B) Can a physical therapy helps or heal ALS for some time or reverse some of the effects temporary with a massive improvement? Or we can roll out ALS at this point since the physical therapy did some improvements?

Sorry if I bothered you but believe me I tried my best for years not to post my story but now I couldn't, I'm soulless surrended to my fears, and my anixiety and mental issues are at the worst..

God bless you all.
 
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lgelb

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Bulbar-onset ALS does not take >3y to get to where you are (still talking, eating, swallowing), nor does it reverse with physio. So I suggest that you seek counseling for your fears, so they don't tie your life in knots for another decade, and follow through with the tests your neurologist suggested so you know what, if anything, you are up against and can probably make it better still, for living the rest of your life.

Best,
Laurie
 

affected

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Answers:
A) No
B) No

Please do not continue posting here, we are very sorry for your distress, but we cannot engage in this with you as it is bad for your mental health, and taking the time away from the terminally ill.

Go see your doctor immediately and tell them you are asking the terminally ill to help you. This will allow the doctor to help you properly.
 
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