Question for the diagnosed folks, please

Hi

I'd emailed my neuro in Tampa because of severe leg pain--and mentioned the pulmonologist's prescription for 24/7 O2.

She has said that O2 is generally not given to people with possible ALS--I'm waiting to hear back from her regarding whether or not she wants me to stop using it...but, my question.

Have any of you heard that Oxygen is bad for ALS? They ordered it because my sats are in the 80's.

She's asked her scheduler to expedite an appt for me, but the soonest I can get in to see her is August 18th.

She's not too keen on my paying for a pain doc--but here where I live--you just can't find one that will take insurance--I've looked and looked.

My GP wanted me to go on oxygen, thought it might help with energy. I called my neurologist at Emory and he said absolutely not. He told me oxygen is not good for PALS. He explained why, but honestly, I don't remember.

That's where I'm at--she said it's not good--but she didn't tell me why. I wrote back and gave her the 6 minute walk findings--but she wasn't too keen on him ordering a c-pap verses a bi-pap, either. But, my PFTs aren't THAT bad yet--I think it as in the high 60 % range somewhere.

I just can't walk and breathe or talk and breathe. Sitting doing nothing I'm fine for the most part. I took her notes with me to the pulmonologist, too.

I don't know who to listen to.

Going on the oxygen might benefit you. As it stands now, you do not have a diagnosis of ALS and some of your troubles might be helped by a sufficient supply.

Look at it this way, if it turns out the oxygen does more harm than good, nothing ventured nothing gained!

AND, it may give you something more to feed the trolls with!

Best of luck! I'd go on the oxygen, myself, as I find it a valuable commodity!

The reason PALS are not typically put on oxygen therapy revolves around what drives breathing.

In a healthy individual, the main drive to breathing is the build-up of carbon dioxide in the body (we rid the body of carbon dioxide by exhaling). In a PALS, breathing is labored and thus exhaling is not what it would be normally . . . and thus . . . there is a build-up of carbon dioxide in the body above what is normal. The body's drive to breathing is therefore "reset" to a higher level of carbon dioxide and thus causes the normal drive to breathing to be diminished.

The body compensates by using low levels of oxygen as a greater drive to breathing. Therefore, if a PALS is put on oxygen, the drive to breathing (now due in larger part to low oxygen levels) is diminished even further (because the supplemental oxygen increases oxygen levels in the body) and could cause respiratory arrest.

Wright, could that be why it's only at 2lpm and on a conserver--where it only gives the O2 when I actually breathe? The Neuro is out of town til next week, so I got an auto-response back when I emailed her to ask if I should stop using it.

Her email seemed pretty emphatic that I shouldn't be on it, though my sats are pretty low. The pulmonologist knows of my assumed diagnosis. My breathing is very labored--but I also have asthma and COPD--so I can't ever be on more than 2lpm because I'm apparently on a hypoxic drive or whatever. Sorry--RT is not my area of expertise, I'm afraid. I do remember as an EMT, we never put COPDers on more than 2lpm unless we were prepared to intubate them if needed.

it's very difficult for me to get to appts with her as she's so far for me--two hours in a car and me are a very bad combination--but she's an absolutely wonderful doctor. (not many would take the time to email patients back personally)

Her office said I need to see a pulmonologist that specializes in ALS verses a normal pulmonologist--but I have multiple issues, so I confuse them all ;(

Zaphoon, I've been on it for two months. It helps a lot when I'm out and about, which is when I get the most short of breathe.

And, you're right, I don't have a diagnosis yet, but she's pretty convinced ALS is the diagnosis--I'm not sure about what the feeding the trolls comment was supposed to mean--I already know I'm apparently their number one feeder.

I have a lot going on physically--and they seem to be having trouble sorting out what is what. I have to believe the neurosurgeon that says it's not my spine causing the problems--since the ALS specialist agrees--it's the pain doc that thinks they're both wrong.

It would help a lot of one doctor could treat everything--but they all want you to see specialists--I have only done one self-referral--and that was to the neurologist in Tampa--as Courtney from ALSA got me in to see her--I changed insurance plans so I COULD see her.

My GP is useless--he hasn't so much as laid one FINGER on me for anything. How can they treat you if they won't even touch you? Sheesh. But at least he writes my Warfarin, Metformin and other various meds needed to survive.

I think it might also have to do with the fact that your muscles atrophy ..including your lungs in late stages and the oxygen is just like helping it go faster...if that makes since.

For example, it is like if someone broke their leg. They get a cast and maby a wheelchair or crutches to help them out in the beginning...it works fine and helps out but as you use it more and more to depend on, your leg gets weaker and weaker.

Ie. the more oxgen you are put on the more you will find you have to use it and your muscles become atrophy and become 'sloppy and slackers' as I put it because they don't have to work as hard anymore to do the job they were supposed to do in the first place. Soon you will find yourself 6 months later without a cast but unable to even walk because you never asked those muscles to move at all during those 6 months...why start now when there is an aid to help them along? Same goes for the oxygen.

I am in same boat as you. O2 is in high eighties though but still not put on 02. Dr. wants to make me 'work' for the air..which is a good thing...keeps those muscles going ...I do have an inhaler though to help if I get severly out of breath after doing a 'strenuous' exercise.

Hope this helps...it is how I understand it anyway as a young woman diagnosed with this disease...I try to put it in simpler terms that make more sense to me

notme,

Here's a couple of links that will help explain why your ALS neuro is so concerned:

Dr. John R. Bach - The DMD/SMA/ALS Doc

Oxygen is NOT for Hypoventilation in Neuromuscular Disease

Perhaps you should push both your pulmonologist and your ALS neuro to talk to each other rather than relaying their concerns through you. After all, that is what professionals do, rather than behave like a warring married couple passing messages to each other through their children.

In all fairness, the pulmonologist hasn't said anything since he wrote the prescriptions for the O2. I haven't had my follow up with him yet. He just had the neuro's notes.

The neuro ordered the sleep study--and said I should follow that up with a pulmonologist, which I did. To my knowledge, they haven't spoken, but both should have each others notes. I haven't had the blood gasses done yet, either, but will before I see the pulmonologist again.

Thanks for the articles. Perhaps the mix up is more that no one is sure if my pulmonary issues are my lungs or poor muscles or a combination of both. I just know the c-pap is making me feel worse--so I've stopped using it--but have been using the O2--especially when I'm doing anything that exerts me.

I posted a while back about doc wanting me on O2 full time because of sats in the 70s when walking. I have not been diagnosed with anything, and may not ever be. But...I am concerned if I go on O2 now, where do I go from there? Am thinking about using it at night. Hard to know best way to go.

js58 said:

I posted a while back about doc wanting me on O2 full time because of sats in the 70s when walking. I have not been ALS diagnosis with anything, and may not ever be. But...I am concerned if I go on O2 now, where do I go from there? Am thinking about using it at night. Hard to know best way to go.

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Actually, it's quite simple in your case -- do what your doctors recommend. Unless you enjoy feeling crappy all the time. Which appears to be the case or you would have done what they recommended when they recommended it and would now know whether it was the right thing to do.

Unless you've got one doctor telling you to use O2 and another doctor telling you that it's dangerous for you to use O2, your situation is in no way similar to that of notme or that of any of the PALS around here, so advice given here to her and to them does not apply to you.

I didn't think the advice given to her applied to me in any way. I don't enjoy feeling crappy, and when I figure out how to pay for the O2, I will get it. I have figured out why I don't post here very often.

js58 said:

I didn't think the advice given to her applied to me in any way. I don't enjoy feeling crappy, and when I figure out how to pay for the O2, I will get it. I have figured out why I don't post here very often.

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check craigslist. Very often you can find concentrators for home pretty inexpensively if you don't have insurance or medicaid

js58 said:

I didn't think the advice given to her applied to me in any way. I don't enjoy feeling crappy, and when I figure out how to pay for the O2, I will get it. I have figured out why I don't post here very often.

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How often you post here is certainly your choice to make, but you're not ever going to get much sympathy here for not following your doctors' advice. If you are financially unable to pay for what your doctor has recommended, then open your own thread asking for help with that problem and we might be able to come up with some resources for you. Of course, that means giving us some idea where you live so that members that live in your area can point you to those local resources. However, that is also up to you -- be more specific and get more targeted help, or continue to shroud yourself in mystery and get vague suggestions.

Your call.