Sleep Study Waste

[RCADO]

Hi. I have ALS however I don't think that some tests are necessary. I've seen some of the costs already and they are extremely high. The latest test is a sleep study to be done this Wed. I am going to cancel on Monday. I said to my Dr. that sometimes as I begin to sleep that I needed to catch my breath. That only happened during a short period and only when my nose was stuffed. She then said I need a sleep study test. Am I missing something or is there a reason why my insurance co. should cover this cost?
BTW my breathing test was excellent.

 

[GlenBrittle]

Well, personally, I think it would be unwise to cancel that study.

You have ALS, and its all about positive attitude and energy maintenance / conservation.

Why would you cancel a test that could possibly show any issues with the one activity that restores your energy ?

So what , it costs some money. Money well spent I would say. If you come out without issues , then great. But , if they find something like sleep apnea, then now is the time for CPAP or BiPAP while you sleep.

Hoping you change your mind.

Glen

 

[brooksea]

Our ALS clinic RTs told us the sooner the better for a BiPap! They think it helps for survival rate in pALS.

 

[handinhand]

Going to see the pulmonary Dr next Thursday. Wondering if he will want me to start using the Bpap machine? My oxygen level went from 82 in Feb. to 52 this month.... I called my Dr. like Glen suggested.. He said to wait and see what the pulmonary Dr. said.. So that didn't work Glen, He didn't seem real concerned about the drop. Said I am still in a pretty safe range. What is unsafe? Wondering? Anyway I hope to get all the tests and I surely hope he wants me to get one. In need of more energy...... Linda

 

[BethU]

If you have to catch your breath while falling asleep sometimes, that might be a sign that you will be needing a BiPap. The earlier the better on these, I understand, although I put it off for six months, figuring that the pulmo was just trying to cash in on my ALS. Not so, apparently.

HOWEVER, you don't need a sleep study for a BiPap if you have a diagnosed of ALS.

Sleep studies only identify sleep apnea, a separate thing entirely. But those are doctor's orders, and she went to med school, not me. Actually, this may just be one more example of the Great American Health Care System in action. There was some fussing from the insurance company in paying for my BiPap, because I hadn't had a sleep study that showed apnea (I had two before ALS that showed I DIDN'T). But that is still the diagnosed on my BiPap supplies, "sleep apnea," not ALS.

So, she may just have to game the system and spend unnecessary money on unnecessary tests to get you the equipment you need. I'm (reluctantly) with Glen, because I think it's kind of a rip-off too, but you will eventually need a BiPap, and if this helps you get it, go along. The only problem with sleep studies is getting the gunk out of your hair the next day.

HandinHand ... my FVC was 35% in June, when I started using the BiPap full time, and 46% in September, so this definitely helps. I don't know about oxygen ranges, but certainly ask your pulmo about getting on BiPap asap.

 

[rose]

If you have the insurance to cover the study, then you're only out one night in your own bed. Its really hard to judge how well we are breathing when asleep, because we're just that ~ asleep.

It can help with fatigue during the day too. You know what I discovered, and my family and friends noticed it too (without having it pointed out to them) is, during the day, when I take the time out to use the bipap for about 20 minutes or so, not only do I feel better, and stronger, but my voice gets louder and stronger too.


Even if a sleep study finds you're A-OK, the information will still be useful in creating a baseline.

 

[RCADO]

Thank you all for the reply's. I will contact my Dr. on Monday and ask her why on the sleep study. If convinced I'll continue. I just believe we all pay for unnecessary tests and once again I can't believe some of the costs at this early stage even if insurance covers it. I may be very naive at the beginning of this journey.
BTW is patients like me a useful site? Not sure how it gets paid for.
Those that keep this site going have all my thanks.

 

[Al]

Patients like me has some good points but I wonder how they are funded. Their site is more about tracking patients. We're more about support.

AL

 

[shelleynshaggy]

Being the one on the other side (of the bed) - go for the sleep study - Jim says the same - he is not awaken by his tremors, snoring, etc. I am pushing for one next visit - he doesn't think his sleep is effected - but mine is!

Seriously -- there may be more going on then you are aware of. If I have learned nothing else in the last few mos - hope to catch things early & slow them down if you can.

 

[Zaphoon]

I vote for getting a bipap.

Zaphoon

 

[handinhand]

Question,about breathing. Beth you said that if at night you have trouble catching your breath, It might mean you need a Bipap? What is happening to me is sometimes during the day and when I go to bed ,I will just take a real big breath. I don't even know when is is going to happen. I don't feel like I am out of breath. It just happens... Has anyone had similar breathing? Thanks Linda

 

[BethU]

Wow, Linda! These wierd, strange oddball little symptoms make no sense, but ... yes ... I have experienced that a LOT, especially at the very early stages, and before my bulbar symptoms started, which was the "official" start of my ALS (although I think it was creeping up on me for several years before). I think I even asked people about it, if it happened to them, and they looked at me like I was crazy.

I took a HUGE inhale, always involuntary, usually when I started to relax. Wonder if it is related to the bouts of jaw-breaking yawns associated with ALS.

Now, I couldn't inhale that deeply if you paid me. :lol:

 

[rose]

me too.! Then, I asked about it when I had sleep study, asked if I had any evidence of Central Sleep Apnea (where the brain just "forgets" to breathe) and the doctor said no, only obstructive, but I still think that's what it is, central nervous system has a glitch.

 

[GlenBrittle]

I always thought it was my body just trying to relax.

Glen

 

[Zaphoon]

I value the air I breathe. My dad had emphysema and his body never seemed to know if it had enough air or not. Very scarey!

Should the time come when I can no longer play my trombone, there is always the cowbell!

The world could use a little more cowbell!