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Old 01-20-2015, 05:19 AM #1
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Default Oxygen concentrator

Hi, I came across this thing, an oxygen concentrator.
Since my breathing problems (breathing in) are my no 1 problem, I will do almost anything to try and make this problem go away.

So now I saw this thing, and haven't found out how it works, or anything.
Is there anyone who has tried this thing? Can it be used by MG patients who have a weak diaphragm?
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Old 01-20-2015, 05:25 PM #2
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Do you have a pulmonologist? Since your breathing is bad, you really should be checked out by them and ask them what would be the best thing for you!

Have you had an overnight oximetry? I've had it done and it's easy.

You can't tell what your O2 is at night by what's going on in the daytime. When MG is bad, it can drop a lot while sleeping.

And poor breathing is hard on the heart and brain. If you haven't had an ECG or an echocardiogram, I would highly recommend you do that.

It's really not as simple as whether the oxygen concentrator is good. They work well and are great for some people, especially those with COPD, for example.

You wouldn't want to retain too much oxygen either, so it depends upon how your MIP and MEP are doing.

Do you have a BiPAP?

Breathing "helpers" can be tricky and it's best to have a pulmonologist fully evaluate where you are right now.

I'm really sorry that you aren't doing well!!!


Annie
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Old 01-23-2015, 08:58 AM #3
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Hi Annie, thanks

I did have a pulmonologist, but he stopped working due to old age so that's when I stopped going there. He was very good but I've had horrible experiences with other pulmo, so you can say I'm reluctant to try and go see one of the new guys.
Ive had these breathing problems since the beginning years ago, so I'm pretty sure testing will show something different. had one a few months ago (without pulmo)

Yeah, I've had an overnight oximetry, and probably every test possible too
I tend to have more issues during day time, weaker diaphragm.

I didn't understand what an oxygen concentrator is, but it only gives the air you breath a higher concentration of oxygen (jeez, didn't get that, even though the name pretty much says it all ) What I want, is something that -on my command- will push air into my lungs. You know, not all these weird stuff like ventilation and whatever more, just a simple thing that gives me air when I need it, without me having to actively breathing it in. Something to have in your home, and just using it when I feel it's necessary.

I'm disappointed this isn't an option. It's hard because my breathing changes so much: in a week I can go from almost no problems breathing to nearing crisis and needing to go to the ER. Everything in between. It is the most debilitating symptom I have in all my life with my many different diseases.
My main problem with "not getting what I think is good for me" is because the tests always come out differently. Well, yeah, duh! It's typically MG.
Another thing is that it just isn't normal way to treat. They rather use pills, and here they never, ever give a MG patient a bipap.

I don't have a bipap, but that's something I want most in my life right now. Or someting else that pushes air in my lungs. That's why I asked for an oxygen concentrator, I saw this was something you could buy without needing a prescription.
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Old 01-26-2015, 03:14 AM #4
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I'm sorry you don't have a doc right now. Do some research and get one!!! You absolutely need to be evaluated and get some REAL help!!!

I don't know if the concentrator is an option or not. You might need more than one type of respiratory therapy.

I'm sorry you're having such a rough time.

And, please, see a cardiologist to make sure there aren't any other issues!


Annie
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Old 01-26-2015, 07:31 AM #5
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Quote:
Originally Posted by Ravenclaw View Post
Hi, I came across this thing, an oxygen concentrator.
Since my breathing problems (breathing in) are my no 1 problem, I will do almost anything to try and make this problem go away.

So now I saw this thing, and haven't found out how it works, or anything.
Is there anyone who has tried this thing? Can it be used by MG patients who have a weak diaphragm?
Hello Ravenclaw. I think maybe I can help. yes Annie is correct you need a pulminoligist.. but with that said, I have a Bipap and an oxygen concentrator.

I have because of the MG, random sleep apnea and like you during any given day my breathing can be weak.

I have a Bipap which is different than a cpap in that it has a high and low pressure setting that can be adjusted appropriately for each individusl based on levels needed to expel co2 and assist in expanding lungs/diaphragm thus strengthening. there is also a timer so they can gradually climb to the peak/ideal setting.

Now my oxygen concentrator produces pure oxygen which is than pumped into my bipap at the rate evaluated, mine happens to be 3 lpm, I hear the average is two, my docs claim they want my O2 to stay above 90% so this is what is required.

setting the bipap can be tricky even if you know what it should be set at.
My prescription calls for the specific settings night and day as needed.

I have, about once a month, oxygen level tests which are monitored with what looks like a wrist watch, this evaluates your nec o2 levels needed by concentrator.

Hope this helps.
Dan
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Old 01-29-2015, 02:16 PM #6
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Thanks, both of you.
Your advice helped a lot, I've asked my GP if she could recommend a new pulmonologist that would be good in my special case.
I have some trouble explaining why I need a pulmo, even though I have a good neurologist, specialised in MG already. My GP said: if you have breathing problems, due to your neurological disease, you have to see your neurologist, not pulmonologist. Because when you have double vision, you don't see an eye doc, but again: your neurologist.

Well, that seems logical to me.
So, I don't have sleep apnea, "only" pure weakness due to MG. Does that still require a pulmo, or does my GP have a point?

Oops, forgot to mention: I'm already being checked regularly by a cardiologist. My heart rate is kind of high, not terribly, but "above average", and I have some mild prednisone - induced - heart problems. See him at least once a year. Never mentioned my breathing though (?)
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Old 01-29-2015, 05:07 PM #7
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Your doctor is wrong. She not only doesn't have a point, she has no leg to stand on.

When a patient is in a MG crisis in the hospital, it's BOTH neurology and pulmonology who work TOGETHER to help us!

Neurologists are not breathing specialists. They are not qualified to assess and treat breathing issues. Do neurologists have pulmonary function test machines/equipment in their office? Do they run arterial blood gases and know how to fully evaluate them? Do they have the overnight oximetry machines to see if our O2 is falling to dangerous levels while sleeping?

No!

Many diseases need the care of more than one specialist. MG is no exception.

And pulmonologists are the ones who order the supportive breathing apparatus, not neurologists (unless they are sleep experts)! If you want a BiPAP or oxygen concentrator or both, the only one who can fully assess and treat you is a pulmonologist.

And she's wrong about the double vision, too. A neuro-ophthalmologist can give you tips on how to handle DV. No, they don't treat the underlying cause, but it's still helpful to see them (if they're a good N-O).

And you are seeing a cardiologist from effects of Pred. So that makes three doctors you need! Oy!!!

Of course, a general practitioner is not an internist (there is a difference!). So she might not understand how all of this works, although I can't really understand why not!

You need help, not a runaround. I hope you can help her to understand why you need a pulmonologist! Good grief!


Annie

Last edited by AnnieB3; 01-29-2015 at 06:54 PM.
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Old 01-30-2015, 08:40 AM #8
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Quote:
Originally Posted by AnnieB3 View Post
Your doctor is wrong. She not only doesn't have a point, she has no leg to stand on.

When a patient is in a MG crisis in the hospital, it's BOTH neurology and pulmonology who work TOGETHER to help us!

Neurologists are not breathing specialists. They are not qualified to assess and treat breathing issues. Do neurologists have pulmonary function test machines/equipment in their office? Do they run arterial blood gases and know how to fully evaluate them? Do they have the overnight oximetry machines to see if our O2 is falling to dangerous levels while sleeping?

No!

Many diseases need the care of more than one specialist. MG is no exception.

And pulmonologists are the ones who order the supportive breathing apparatus, not neurologists (unless they are sleep experts)! If you want a BiPAP or oxygen concentrator or both, the only one who can fully assess and treat you is a pulmonologist.

And she's wrong about the double vision, too. A neuro-ophthalmologist can give you tips on how to handle DV. No, they don't treat the underlying cause, but it's still helpful to see them (if they're a good N-O).

And you are seeing a cardiologist from effects of Pred. So that makes three doctors you need! Oy!!!

Of course, a general practitioner is not an internist (there is a difference!). So she might not understand how all of this works, although I can't really understand why not!

You need help, not a runaround. I hope you can help her to understand why you need a pulmonologist! Good grief!


Annie
Again Annie is correct, I have because of my MG numerous other doctors involved, pulmonologist, cardiologist, endacronologist, primary care doc, etc.. they all work somewhat together. beware of the everything is MG fault.. it may be to a point but the correct treatment still has to be made available..My pulmonoligist was recommended by my neuro.. specifically because the apnea an breathing disorder is most likely caused by the MG...
hope this helps.

It is explained this way to me, even though the muscle disorder is controlled by the brain and not an actual bad muscle, the damage is still the same.....
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Old 02-03-2015, 03:43 PM #9
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Thanks, both, I've talked with my GP and we'll look for a good pulmonologist. she's going to see if there's a pulmo that has some knowledge/experience in neuromuscular stuff, and will get me an appointment soon.

By the way, my neurologist always does this test, where I have to blow in a tube 2 or 3 times. I really don't see the point, because (as I always tell all my docs), it's no use. It's the forced vital capacity. But, maybe it's just me, but I just feel stupid doing that test.
I mean, it comes out 75%, and they're like: it's mild! And another time it comes out 45% and it's like: oh, so severe!

Am I the only one with MG who feels there fvc differs every hour? I have breathing problems every day, but not every minute of the day.
I hate that it changes so much, because that makes those tests unreliable (though docs seem to rely on them a lot).
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Old 02-05-2015, 05:40 PM #10
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If your breathing is fluctuating that much, that is very concerning.

I'm glad you're going to find a pulmonologist.

Simply doing the "breathing out" test isn't sufficient. Breathing in can be as problematic. Even my asthma doctor has specialized breathing tests to check for that!

I have both a peak flow meter and an incentive spirometer, which a pulmonologist can give you. While a peak flow meter is often used for asthma, it can also check how your MG is doing. Don't do it a lot and wear yourself out, though! The incentive spirometer is useful for guarding against atelectasis, which some MGers with breathing issues can get. You should talk about that with a pulmonologist, too.

When was your last chest x-ray? I'm not saying to get one—because radiating yourself unnecessarily is silly—but wondering if they've ever seen atelectasis on film.

http://my.clevelandclinic.org/health...ive-spirometer

http://www.mayoclinic.org/tests-proc...n/prc-20013057

If you get dizzy while you do either of those, then don't do them anymore! Your breathing doesn't sound stable, and you really need help soon.


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