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CaptainPlanet

Active member
Joined
Oct 26, 2014
Messages
45
Reason
Learn about ALS
Diagnosis
10/2014
Country
US
State
CA
City
San Pedro
Since my last post i've had some pretty scary developments with my breathing among other things.

because my doctor 'suspects ALS' after a battery of tests and EMG, I'm having a hard time putting into words what im experiencing particularly with my breathing.

My breathing ability seems to have a mind of it's own: Having many upswings of breathing strength followed by scary and weak downswings of difficulty drawing air in, and intense almost burning pain in my diaphragm.

I can usually tell when a downswing is coming on as my breathing effort will become weaker almost like a 'burnout' or 'fatigue' and this usually happens when I exert my voice or cough a lot.

Does this sound like any PALS that have breathing issues?

I'm only 27 and still am in denial that this could be ALS. The odds are just too much in my favor. Although, I read that very few respiratory onset cases are diagnosed in time.

Also, I have had to strain more and more each week to empty my bladder. It's like i'm losing the ability to push urine out of my bladder.
 
In a previous reply you asked me how far Clearwater was... it's right here on your computer monitor.

I'll give you credit... you don't know when to quit. You've been told by very knowledgeable members... You do NOT have ALS!. Regardless to what your severe anxiety is doing to your SELF diagnosed weak diaphragm, weak breathing, near death feeling, symptoms you have read in these Thread and now your immature brain has created... you do not have ALS.
You need help and you will not find it here. I expect the replies following mine maybe harsher than mine. Stay tuned.

PS. You wrote, ("Does this sound like any PALS that have breathing issues?") No. Nope. Nada.
So, read some more and come up with another if one of the moderators don't ask you to leave formally.

PS #2 As you also previously wrote,

("Anyways, goodbye everyone.

I won't be back unless I am diagnosed or live.

I've already made special arrangements with my family to return to this forum and inform in the event that I don't survive. I have also instructed them to screenshot and DOXX my diagnosis (post my medical docs) to this forum for proof. Even if I die I will get a diagnosis from the coroner and it will be posted here.")

You also have a short memory. Anyway, you left a lot of us hoping. But... you're back.
 
What you describe for breathing issues is NOT ALS. It don't f'ing work that way. Your describing anxiety attacks, plain and simple. The burning you describe sounds like acid reflux ( heart burn ) brought on by anxiety. You should be hanging out with people your own age doing things young people do, not trying to convince yourself and others your dying.
 
- my doctor 'suspects ALS' after a battery of tests and EMG >> sorry to hear that. Are you following up to get a definite diagnosis?

- many upswings of breathing...downswings of difficulty >>> Interesting, but not ALS. In ALS, a nerve is destroyed rather quickly, and then the corresponding muscle never works again, it just goes limp.

- burning pain in my diaphragm. >>> Good news. The weakness caused by ALS doesn't cause pain.

- 'fatigue' ...when I exert my voice or cough a lot. >>> Also good news. ALS doesn't feel fatigued. The muscles simply go limp.

- I'm only 27 >>> more good news.

- losing the ability to push urine out >>> Definitely not a sign of ALS. Experts agree that ALS doesn't affect bladder or bowel functions. My wife, who died of ALS, never had a bladder problem.

CaptainPlanet, I've read your previous posts, too, and I don't see ALS in you. You might want to question your neurologist more, and get a neurologist who specializes in ALS.
 
My Dr first suspected the breathing issues as 'panic' because of the absurd possibility that I could be a 27 year old resp onset. He since put me on xanax zoloft, and ativan. All of which have not fixed my breathing problems ruling out anxiety as the cause. My lungs are just weakening plain and simple. A little bit every day. The best way I can explain it would be in numbers like this:

Upswing / Downswing
100% 95%
98% 86%
90% 77%

After each downswing my breathing overall is slightly weaker and stays that way slowly declining.
 
AL, why don't you just back off man? You are trying to deflect anyone who comes to my thread with something helpful to say by saying i've been told numerous times 'you don't have als'. That is simply untrue and unfounded. I have a Neuro who thinks I have ALS, yes I am following up with the university for precise diagnosis BUT right now i'm having breathing trouble. I came back to see if my experience with breathing problems sounds like ALS to anyone.

I'm staying in the DIHALS and out of general as a respect to the mods. AL, just leave me alone please.
 
My lungs are just weakening plain and simple. A little bit every day. The best way I can explain it would be in numbers like this:
...
After each downswing my breathing overall is slightly weaker and stays that way slowly declining.

If that's your major complaint then you should see a pulmonologist. Doesn't sound like any case of ALS I've ever heard of.
 
Does not sound like any ALS onset I've hard of, not even a little bit like it.

FOUR members now (including myself) have said on this thread - this does NOT sound like ALS.

Please follow up with your doctor but stay off this forum as you have received many replies in more than one thread now. That's all we can offer unless you get a definite diagnosis.

Sorry but we are stretched to the limit and all feeling a bit more stretched after some losses this week.

Please don't reply, just keep going back to your doctor, that's the only person who can help you.

All the best
 
Planet, have you been to a pulmonologist yet? No!

All of this is your SELF diagnosis. Members of this Forum do not have the time or desire to console people who are diagnosing themselves.

You may be on a shit load of anti-anxiety drugs but it does not mean your brain is not over powering them with your OCD. (Look that one up.)

I believe you previously wrote you have been to the ER 7 times and all they did was send you home. They (medical professionals) get it... you don't.

Edited; on second thought... :)

Another PS. You posted, ("Upswing / Downswing
100% 95%
98% 86%
90% 77%)

Where in hell did that come from? The pulmonologist you haven't seen yet? Or... more of your self diagnosis?
 
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