ALS Specialist could not answer questions about breathing problems!

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Andy2020

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My sister and I went with my Mom and Dad to his first visit at the ALS Clinic.


My Dad is still able to walk, talk, swallow. He actually is doing great!

But his #1 problem is breathing problems. He almost died, because of it and spent 8 days in the hospital.

His Pulmonologist told him he didn't understand ALS and said he should talk to the ALS Specialist about it.


So we asked the ALS Specialist questions and he said to talk to the Pulmonologist!
:(


Ridiculous!

How can a Neurologist be an "expert" in ALS and not know anything about breathing problems in ALS patients?!
 
I have choking issues that they don't seem to understand. I get a tickle in my throat, and my throat, or something closes. I can't breath when it happens. What is his problem?
 
Find another pulmonary doctor.
My breathing was one of the first problems I had. My ALS started in my hands but quickly affected my diaphragm and breathing.
 
Be sure and scream at your pulmonologist as loudly as you scream at the ALS. Lungs and diaphagms are the pulmonologist's specialty. That pulmonologist is pleading ignorance so your father will go away and not be one of his patients. He knows enough to deal with your father's breathing problems -- he just doesn't want to.

A word of advice to you, Andy -- the ALS specialist is not a miracle worker, nor is he or she responsible for your father having ALS. If you keep blaming them for every problem in your father's care, you may find yourself very much alone when you need their support. Why should they do anything beyond the absolute minimum for somebody who thinks as little of them as you do?
 
Be sure and scream at your pulmonologist as loudly as you scream at the ALS. Lungs and diaphagms are the pulmonologist's specialty. That pulmonologist is pleading ignorance so your father will go away and not be one of his patients. He knows enough to deal with your father's breathing problems -- he just doesn't want to.

A word of advice to you, Andy -- the ALS specialist is not a miracle worker, nor is he or she responsible for your father having ALS. If you keep blaming them for every problem in your father's care, you may find yourself very much alone when you need their support. Why should they do anything beyond the absolute minimum for somebody who thinks as little of them as you do?


I treated the ALS Specialist with respect.

Getting mad at him would have served no purpose.

I come on this board to vent.
 
I have choking issues that they don't seem to understand. I get a tickle in my throat, and my throat, or something closes. I can't breath when it happens. What is his problem?


He can't breathe when he lays on his back and his diaphragm is very weak, so when he walks around he tires quickly and can't breathe very well.

The Pulmonologist put him on oxygen and a BI-PAP machine.
 
Find another pulmonary doctor.
My breathing was one of the first problems I had. My ALS started in my hands but quickly affected my diaphragm and breathing.


My Dad had weakness in his hands, also, but they haven't gotten any worse.


We will definitely look for a new Pulmonologist. We were assuming the ALS Specialist would know about breathing problems in ALS patients, so we weren't prepared for no answers.


Thanks Joel.
 
Andy, when you talk about the ALS Specialist, this would probably be a doctor with a medical specialty, who then focuses on ALS patients particularly within that specialty. Probably I would guess he is a neurologist who specializes in ALS. Such a doctor will have to refer you to other doctors for specific help in those areas such as breathing or joint problems. To deal with ALS you need a team of specialists, ideally all of whom are experienced with ALS. You could ask the ALS Specialist to recommend a pulmonologist who is experienced with ALS patients.
 
Andy, when you talk about the ALS Specialist, this would probably be a doctor with a medical specialty, who then focuses on ALS patients particularly within that specialty. Probably I would guess he is a neurologist who specializes in ALS. Such a doctor will have to refer you to other doctors for specific help in those areas such as breathing or joint problems. To deal with ALS you need a team of specialists, ideally all of whom are experienced with ALS. You could ask the ALS Specialist to recommend a pulmonologist who is experienced with ALS patients.

Ok that's what we will do.

Thank You.
 
He can't breathe when he lays on his back and his diaphragm is very weak, so when he walks around he tires quickly and can't breathe very well.

The Pulmonologist put him on oxygen and a BI-PAP machine.

I have that problem too. Even the bipap doesn't make it any easier. Theres not much they can do about it really, unless getting a trache will bypass it. It feels like the pallet is plugging up the airway right?
 
Andy, when you talk about the ALS Specialist, this would probably be a doctor with a medical specialty, who then focuses on ALS patients particularly within that specialty. Probably I would guess he is a neurologist who specializes in ALS. Such a doctor will have to refer you to other doctors for specific help in those areas such as breathing or joint problems. To deal with ALS you need a team of specialists, ideally all of whom are experienced with ALS. You could ask the ALS Specialist to recommend a pulmonologist who is experienced with ALS patients.

It also may be that he needs to see a ENT. Ear Nose Throat Dr.
 
I have that problem too. Even the bipap doesn't make it any easier. Theres not much they can do about it really, unless getting a trache will bypass it. It feels like the pallet is plugging up the airway right?


His main complaint is the BI-PAP machine pushes air in "too strong". It's overwhelming for him.

I believe the pressure needs to be turned down, but the settings were pre-programmed, so it can't be adjusted without a Dr's prescription.


He sees the Pulmonologist again on Tuesday.
 
Be sure and scream at your pulmonologist as loudly as you scream at the ALS. Lungs and diaphagms are the pulmonologist's specialty. That pulmonologist is pleading ignorance so your father will go away and not be one of his patients. He knows enough to deal with your father's breathing problems -- he just doesn't want to.

A word of advice to you, Andy -- the ALS specialist is not a miracle worker, nor is he or she responsible for your father having ALS. If you keep blaming them for every problem in your father's care, you may find yourself very much alone when you need their support. Why should they do anything beyond the absolute minimum for somebody who thinks as little of them as you do?


Just to clarify.

I am very frustrated and I come on this website to to vent.

I have treated every Doctor, Nurse, and medical personnel, along the way, with respect.


Not getting answers has been very frustrating, so coming on here to "scream" has been very therapeutic.
 
Your venting, along with the stubbornness of some of your ideas about alternative medicine, even in the face of reasoned criticism of those ideas shows me that you have some kind of issue with medical practice in general. If you truly think that you can successfully hide your disdain for the ALS establishment from them, you need to make a career out of politics or poker.

Sometimes, there are no answers to give. And you are just at the beginning of the frustrations, so you might want to reserve some indignation for a more appropriate time. Just saying.......
 
Hi ANDY,
It's been 4yrs yrs & still not alot of answers ,I guess patience is a virtue & really mine is running thin.I watch my husband everyday try to do things that he always could & it's very frustrating,so push those people for answers & I believe you are showing them respect but some times you have to push.God Bless your family.
Sharon
 
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