New worry

[Cammarak]

Do, I went to my neuro today, as I do every three months, and they want to redo my EMG since it has been two years and I have some additional weaknesses now, but the more worrisome thing is they are sending me for a respiratory study. Anyone have this test done? Is this something to worry about? There shouldn't be breathing issues with PLS, right? Breathing isn't voluntary. has this been standard for anyone else?

 

[Vincent]

Breathing is voluntary. This is what people with ALS die from, respiratory insufficeincy. Don't know about PLS but with ALS they watch breathing very closely.
Vincent

 

[Cammarak]

That's my concern--I know respiratory insufficiency is a huge concern for ALS. I thought it was NOT a big concern for PLS. I'm just wondering if oTher PLS people have had the test done, and what it entails.

 

[Green Queen]

Oh Cam, I can feel your worry from here! Maybe it's a precaution? You know how doctors like to cross their Ts and dot their I's.
How easy it is to say don't worry, but until it's all done, you are going to worry! Are you able to contact the doctor who ordered the test and enquire as to why? That's what I would do. I'm usually too dazed to ask at the time, but I do feel they should explain why they send us for these things.

Please keep us updated.

God bless, Janelle x

 

[lgelb]

It is recommended that PLS pts have these evaluations periodically because PLS can become ALS. Changes in breathing, weight loss and muscles that become weaker can be markers for this progression.

 

[Chumpy]

It is a normal test. It's not the lungs per say that is the issue, but the diaphragm muscles that can become effected. It is good to have the test. If there are issues then extra measures can be placed to assist. Like a BiPap. A lot of people have a similar machine CPap for sleep apnea. With PLS and ALS, it helps assist the diaphragm muscles when you are laying down. Which in turn helps create a better nights sleep and a healthier body.

 

[Atsugi]

I'm no expert, but this is what I think I remember:

Two methods of testing: standing up and lying down. Blow as hard as you can into the tube, until your face turns blue, then keep on blowing til it's ridiculous. Bring your numbers back to the forum so we can all get an education on the subject. Some PALS say it is tiring, and they need to rest afterward.

WHOOPS: A post above said breathing is voluntary. Nope. Breathing is automatic and is accomplished by a totally different nervous system. But quite often, our brains sense a high CO2 content in the blood and we take a deep breath to get exhale CO2. This especially happens when we've been sitting sedentary (like PALS do). Taking a deep breath involves voluntary muscles, and involves some nerves that can be destroyed by ALS.

When we can't take a deep breath, the CO2 builds up in our blood and our brain learns to accept a higher CO2 level. Thus, we don't bother to clear out our lungs, and the CO2 builds even higher. We begin to sleep more because of this CO2 poisoning, and eventually the CO2 gets so built up that we die.

But often, we don't get that far. PALS with a paralyzed tongue may develop difficulty swallowing, and so foods and liquids and pills might get into our lungs. This turns into pneumonia, which inhibits the lung's ability to take in oxygen and expel CO2. A PALS might not be able to cough adequately, so we use a Cough Assist machine to give us a blast of air and suck it back out. It's uncomfortable to do this.

I know that this is a PLS forum, but I had to respond when someone said breathing is voluntary.

--Mike

 

[Cammarak]

I figured he meant to type breathing is involuntary--that would make more sense with his following statement. I calmed down and read my notes from the visit and I had complained that my fingernails looked blueish and that I feel sometimes like I can't get a deep breath--it was just a moment of panic. Because of my deltoid muscles weakening and them ordering the new EMG and then the breathing test, I got it in my head that things were going south.