Respiratory onset at 23 years old, crying everyday. Atypical?

[ActionMan]

Hello,
My name is Adrian (23 years old) and i wanted to thank everyone who will read this. I know that there is a ton of posts like mine, but for the past week i have spiralled down with my mental health because of my symptoms and the good old Mr.Google. (I have a neuro visit in 2 days)
One warning, this post will propably be really chaotic and my English might not be perfect, i apologise for this

Before i start with my "ALS symptoms" i wanted to point a few things that have happened to me lately.

- I have been on anti anxiety meds for 6 months, because of the stomach cancer fear. Back then i had few days when i was out of breath constantly, but this feeling have passed after starting the medicine. I also had chest X-RAY that showed nothing out of the ordinary.

- I had a Brain MRI 2 months ago, because of dizzynes and panic attacks. One demyelination on my right frontal plate was found.
Been to a neuro 4 weeks ago but he said something along the lines " If you dont have any problems right now, there is no point in further testing"
Of course during the visit he made routine checks (Showing my tongue, eye tracking, lifting my limbs, reflexes etc) but nothing out of the ordinary was found.
During the check up, i noticed that i was slightly shaking when i had to lift both of my legs at the same time.
Like i said before, Neuro did not find anything concerning.

- 3 weeks ago i woke up with a massive muscle soreness in a lot of my muscles (Thighs, arms, biceps , neck, back, calves etc)
I had this muscle soreness for about 3-4 days, then it slowly went away. Had a temperature of 37.3 Celcius few times.
But to this day my muscles get tired way faster.

- 2 weeks ago (31 July), i started taking rifaximin for some of my GI issues, after 3-4 days i started to feel out of breath way faster.
My nails were slightly more pink than they should be. At the August 5 i stopped taking rifaximin because of it. Still had days when i had a really low "Fever" 37.3 C at Max.

And now, my "ALS" problems.

The out of breath feeling is still there, sometimes i feel like i dont have a full breath when i"m just sitting, and sometimes i feel that way when i walk/talk etc. (Almost always)
I know that ALS symptoms dont come and go, but i also dont want to overfixate on my body ( even though i started doing it), but im sure that my breathlesness feeling is pretty constant when talking. I live on the 4 floor, and going up the stairs have became sligthly more challenging breathing-wise.
I know that respiratory onset is ultra rare, but i cant shake that worry. Also, i know that this will sound stupid, but i feel like my breathing is not "smooth".

- Second problem that i have noticed, i feel like my abs are weaker.
I noticed that i sligthly shake when i get out of the bed, it worried me and i have to admit that it became an obsession of mine to check my stomach muscles.
I started doing sit ups to test my strength, at first i could do around 20 without being fatigued that much ( but i felt that i shake during that).
I have been doing sit ups (around 15-20) at least twice a day in the last 2-3 days. Progressivelly more twitchy during the excercise.
Had to stop yesterday because my muscles were really sore because of it. But, my abs arent sore honestly, mostly my muscles below the sternum are sore. That worries me because shouldnt my abs also be sore? Im worried that they might be paralyzed already.


- I feel like my diaphragm is weaker, i noticed that like 2-3 months ago but it didnt worried my that much. (i"m a really really really amateur singer, and i noticed that i had to use more "strength" in my diaphragm.)

-My weight 3 weeks ago was 66.3 kg, and now its 65.0. I might have eaten less lately because of my anxiety, but still, i dont know if it should go down like that.

Few days ago some more "fun symptoms" have come up,

-I feel like my voice is slightly weaker and more hoarse. I have been asking my GF about it, but she says that it didnt change. Even though she might be saying this to not worry me, because my fear of ALS is already known to my mom and gf, because of my mental breakdowns in the last few days. This whole week have been really cold and rainy, but i already cholked that cough to ALS.

- My neck muscles are more stiff and it feels like my head is more heavy. I find myself supporting my head with my hand more often (I know that this sound really psychosomatic tbh)
- My both arms are really heavy when reaching the keyboard/mouse.
- I feel that my cognition has declined, i feel like a zombie lately, spaced out way often.


I have read one case of an 71 old man that had respiratory onset with simillar problem (Breathlesness and problems with sit ups), and i have to say, i have spiralled down the constant worry and anxiety. Because a lot of the symtpoms fit right in (In my mind at least).

But there is one thing that does not make sense to me, even though i know that everyone is different.
My breathing issues have started around the 2 of August, and now 7 days later i have way more issues. (Cough, weaker voice, neck stiffness)
Wouldnt that be too fast?

Thank you for reading this chaotic mess lol

 

[Nikki J]

Typical. Of health anxiety. I do not believe for one instant you have ALS and expect the neurologist visit will be reassuring.

You state you previously feared stomach cancer. After the neurologist clears you please get help for health anxiety. It is clearly impacting your life and if untreated will ruin your life

 

[ActionMan]

I have been fortunate enough to get the appointment earlier today, instead of tomorrow.

Neuro was not concerned about my symtpoms, and said that my symptoms does not point to ALS.
But my stupid mind is still worried about it, mainly because im fixated that i might have the rarest respiratory onset, and maybe the neuro is not aware that this onset exists. (Even though the neuro that i have visited has over 40 years of experience in his field)

Can i ask you a few questions? (The most important one is the last one lol)
Im really sorry if thats inappropriate, but its been hard lately and i see that you are really helpfull to other members of this forum.
I will stop with the post after this one, and only will update after the spirometry.


-How does aspiration in ALS work? Does it happen during the swallow? or you can have a slightly irritated throat few minutes after eating/drinking that you makes you cough? Few minutes after eating/drinking/talking my throat feels "scratchy"

- Few hours before the visit i noticed that my right shoulder is lower than the left one, same thing with my nipple.
(my overall posture is slightly tilted to one side) I have kyphosis, but i dont know anything about having scoliosis tbh.
Of course i explained my concern about my posture to the neuro, saying that im somehow worried that it might be muscle atrophy.
She was not concerned ALS wise, but explained that i have a really bad back.
Me being me, i decided to feel around my spine after the visit ,and i did not feel that it is bent to the right or left.
Is it possible that my trunk muscles are wasting, and causing this posture problem? even though i feel like my only issue is that my neck hurts, and is really stiff in the morning.

- i forgot to ask my neuro about another stupid worry that i have found ( i also did not mention it in my first post)
In the morning, when im still at the verge of sleeping and being awake, my hands/ fingers sometimes jerk.
I know that this might be pretty common, but i have noticed this literally few days ago.
The common answer would be that this sometimes happen and also migh be the result of my emotional distress.
But does it point to the ALS?

- Is spirometry the right move to see if my lungs are affected? I saw this post SOB, muscle twitches all over , weight loss,
and i feel like i have a lot in common with this person. I"m not gonna lie, the fact that she did not update slightly worries me, but i think its better to act than just worry and think about the future. I honestly feel like something might be going on, mainly because sometimes i see that my nails are more dark pink than they should be. I have been trying to search for this symptom on here, but i did not find anything, so nails changing colours does not point to ALS?

The uncommon but possible side effects that the rifaximin might cause are shortness of breath, pneumonia.
My family is trying to tell me that i might have had a bad reaction to the rifaximin, but i still experience these issues 7 days after stopping the medicine.

 

[Nikki J]

Aspiration is during swallowing you are not describing it

No you have spine issues. The neuro told you

NO. You don’t have ALS. The neuro said so. You don’t believe him and you won’t believe me. Get help

You can get spirometry. It won’t show als but you won’t believe it either and heaven forbid you get a slightly abnormal value related to your spine issues impacting it or poor effort or something. And that person didn’t come back because she didn’t have als. If she did she would be here or on the uk forum. She isn’t

And no dark pink nails are not a sign of ALS

Please keep your promise about not posting

 

[Bestfriends14]

When you needlessly worry about having different types of terminal diseases, yet show no signs of having them, it's called Illness Disorder. For this you must get professional, psychological help from someone trained in Cognitive Behavioral Therapy. If you do not, having an Illness Disorder can ruin your life, and stay with you for years. Is that what you want at the young age of 23?

Go get help.

 

[ActionMan]

Its me again, i said that i will report after the spirometry. ( As always, i m sorry that my posts are chaotic, im just depressed to be honest, im sorry)

Well.... i did not had the appointment with my primary doctor to review the resutlts, but they are not great for a 23 year old.
(I"m writing this from work, so i cant attach the files, but i can do it later if its necessary)

I had 2 tries during the spirometry, my FVC was in around 89-91% and FEV1 also around 89%, but my PEF was bad... it was at around 64%.
This means that my expiration is not at a good level, my expiration curve is pretty simillar to Differential diagnosis towards MND. (The "funny" thing is that there is rarely someone from Poland on this forum, and the fact that she is from the same city as me)

After i came back to my house, i thought that i maybe just had a poor effort (it was my first spirometry ever) , so i decided to try again one day later, and i have to say it was really depressing.... The lady that was doing my spirometry was not nice to me, i felt like she was shaming me for not being able to exhale properly. Results were pretty simillar. (I looked at the results once and decided that its not worth it)

I would love to not think about it, but i dont know what else there could be, and im not trying to be victim or anything like that.
I just dont know what other disease there could be....
Every one in my family thinks im being dramatic and its all my in my head, for the few past days i have been in even worse slump,
Im sorry if this post is all over the place, i kinda dont know what to do.... i was starting my adult life one year ago and now i feel like its all coming to the end.

I feel out of breath when i walk and talk, My right arm shakes when i move things with my both arms, my right leg hurts when i walk.
For a week now i noticed that i have a slight lisp with words that have S in it (and oh boy, polish vocabulary is full of that) even though my GF says she does not hear it.

If my post is worthless, then im really sorry, i just feel like its the end, i was slowly coming back on the right road after my stupid stomach cancer scare and depression, and know it looks like im getting the most stupid outcome that there is, like honestly, being 23 and getting a respiratory onset is just an unfunny joke.
I could literally sleep all day, i dont wake up during the night, but i dont feel like i was sleeping well. I"m


At first i though that maybe i have lyme, because i had a weird bite mark for a 2 weeks, then my muscles started to hurt like i got the flu or something, but few weeks later breathing problems began.
My hobby was singing, i was doing a lot of amateur covers for fun, few months ago i noticed that my diaphragm is weaker? like its was harder for me to sing while using the diaphragm... now it makes sense why....

Is there even a chance that i will make one year?

 

[Nikki J]

She had more wrong with her pfts and to a significantly greater degree than you. There are much more common causes of your numbers. You need to talk to your doctor. Not diagnose yourself.

I am going to close your thread and do not post again unless you have a definite diagnosis confirmed by the appropriate specialist