breathing difficulties already?

[NotALS!]

I was diagnosed with ALS almost 2 years ago. I started losing strength in one arm 2 years before that so I guess I've had ALS for 4 or 5 years already. I'm starting to have difficulty breathing, like my lungs have to fight to expand. My husband says I take very small shallow breaths at night and sometimes wakes me up to be sure I'm ok.

I still function normally except for weakness in my arms and legs, swallowing and chewing are slower but it isn't apparent that I'm sick.

Can I be dying already? I thought breathing was the last thing to go?

 

[glupavomomiche]

I have respiratory involvement very early too, and my symptoms started just like you described. After awhile I started getting short of breath just doing any little thing. I know of a pALS that the diaphragm is where his ALS started, so it's not always the last thing. However, if you don't get respiratory assistance when it happens, then yes, that would mean you are going to die when it gives out completely. You should have your doctor do the breathing tests to make sure you're doing ok. I just got a BiPAP and that already seems to help. When it gets bad enough, I intend to get a tracheostomy and a vent. But that's just my personal choice. You might not want either one... it's entirely up to you.

 

[Miss]

NotALS, are you using a BiPap? Breathing is not necessarily the last the to go. It seems to be different with each PALS. I find it very disturbing that Pulmonologists dealing with PALS don't tell them this and suggest the BiPap upon diagnosis. It can absolutely slow down the respiratory progression in most patients.

 

[trfogey]

NotALS!,

Are you being seen by an ALS specialist at an ALS clinic? Measurement of respiratory function is one the basic things an ALS clinic does. Once your respiratory muscles begin to be tffected, they can decline at an absolutely frightening rate.

Where did you get the idea that the respiratory muscles were the last to go? That is completely false.