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notgivnup

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PALS
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11/2010
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Saw the pulmonologist today. They called yesterday to have me come in for follow up today visit from sleep test almost 4 weeks ago. I thought they could have just told me over the phone as I belived I would have heard sooner if something was wrong. But even they need to make money I guess.

The results were good, I think, at least he thought so and he's the expert. Had a nice talk w/ him....sleep test said no sleep apnea..yeah! And I only stop breathing for a short bit on the average of once an hour, probably why morning headaches. My breathing slows way down he said like breathing thru a straw, probably why I wake up so often to get it going stronger, but see's no collapse of upper airway. So I guess I'm good to go for now. Yeah!

I did ask about the slow and shallow breathing, and if it could be from my diaphram, not working as well as before, he really didn't know. And was not concerned about the stop breathing for a bit now and again. I know he has never had an ALS patient before but I am trusting his expert advise. Spoke of a mouth piece to keep jaw in place to see if it helped not covered my ins, Isaid no..also having tonsils removed could help...I dont have any...lol.. He mentioned Bi-Pap he didnt think I needed it yet.

Was wondering if anyone has experienced this and if it is normal as he said. Just double checking for those with experience here. Looking for some input from the more highly educated PALS on breathing issues while sleeping.

Thanks
 
notgivnup,

A pulmonologist who is inexperienced with ALS can be a big problem for a PALS because of that inexperience. Frankly, if you are the first patient he's seen with breathing problems caused by neuromuscular weakness, you need to have someone that he can consult with that has experience with neuromuscular weakness, preferably someone affiliated with your ALS clinic who's up to date on the latest standards of pulmonology care for PALS.

If you are already having morning headaches and there is no sleep apnea to account for it, don't take a chance. If the pulmonologist won't prescribe the BiPAP, get after your neuro to do it. Don't let a doctor's ego put your life at risk.
 
Thank You for your input. Iwas kinda thinking the same thing. I will be seeing neuro next week, so I will ask him what he thinks. Pulmo ask me if I wanted the bi-pap but he didn't see that I needed one just yet.I am trying to trust docs, but without prior experience with this disease is why I asked. We do not have an ALS clinic here, only one neuro on island. Thank You again trfogey.
 
Diane, my husband was prescribed a BiPap long before he needed it. If you are on Medicare your FVC needs to be 50% or less. (My husband "just so happened" to have really weak muscles that day he tested.)

If your diaphragm muscles are weak, they are not pumping your lungs as they should. A BiPap will help and will stave off the headaches.
 
Thanks, I don't know what my FVC is, no one ever told me. Just said blowing into that tube thingy, it was ok.I will have to ask them.
 
We were scheduled for a sleep study and Nicole suggested that we come get the FVC tested at Emory instead. My husband doesn't qualify medically for the Bi-Pap yet even though I would like for him to have it for the time that he will need it.
 
Brooksea, think I got it.....think pulmo taked more about in the throat where he was looking for close-up...not for weak diaphram. Right? and maybe I should show "weak muscles" when blowing? Said to call in about 3 months to check again. Is this too long to wait?
Thank you
 
d double post
 
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I've been seeing a pulmonoligist for better than a year. Every three months I've gone in, blown in "the tube", been weighed and ask how I'm doing with sleeping. Then he would ask me if I think I need to bi-pap. I asked him what my numbers were and he said that it wasn't up to the numbers to decide when I needed help sleeping -- it was when I began to notice trouble sleeping and shortness of breath.

About six months ago I noticed that I couldn't speak without having to stop to catch my breath. I mentioned that to him and he said maybe it was time for the bi-pap. Once I started sleeping with the bi-pap I realized that I had NOT been sleeping well. I woke with more strength and energy and every one says that I look so much better -- no longer wearing dark circles under my eyes!

I still have no idea what my numbers are on the test, but Medicare provided the machine with no questions asked so I am assuming I meet their qualifications. :)
 
Thanks , Diane, I too take lots of deep breaths during the day, big sighs,... told him that too, he said it's like yawning to get more air once in awhile...ok. I have gotten dark circles under eyes, can tell cause I have to use more cover-up there..lol ....I would love to have more energy during day, I am always drained even right after waking up, with the stupid headaches.,,, Going to ask neuro to get me one to try and see if it helps me with all these concerns....couldn't hurt.
 
This is just my opinion, but I have read upon this stuff in the past and even went to a couple of workshops. Everyone's breathing slows down while they sleep. However the part about breathing through a straw would make me think a bi-pap would be a good idea. I would suspect your oxygen levels would be dropping while this is happening and that would be causing your morning headaches.
Also I tend to agree with the others who have feel you need to see a pulmonologist with experience in ALS. The one you saw maybe an expert, but he is just a beginner in the field of ALS. This is too serious to be the person he learns on.
 
Thanks, grandmommyk, They said my oxygen was ok...maybe I need to find out what all their "OK's" really mean.

I seem to be this islands lab rat....LOL

I Always remember, I know know BIG GUY, so I am in good hands!
 
I agree you need to have your doctors at least consulting with others who have experience with ALS. The thing is, its not just the increased oxygen flow (in and out). Its ALSO the benefit of the diaphragm having a rest for a few hours each night. When we sleep, we don't use our intercostal muscles for breathing, all of the work is done by our diaphragm. And, the diaphragm has to work harder when we are laying down, than when upright.

Not too long ago, someone here on the forum posted a link to an article about a study which revealed long term benefits of PALS using the bipap. I don't remember the exact percentages, but it was found to extend life by many months if bipap was used at least 4 hours per day. I think the study said almost 1.5 years in some cases, but I don't remember the specifics with enough certainty to say how long, just significantly longer. I believe the study only included those who's FVC was at 50% or lower, but, it follows that it would help any PALS.

You do not need for your FVC to be at 50% for Medicare to cover the cost, if other criteria are met. I've been on bi-pap since November 2008, and it is covered because of low MEP/MIP scores.

Here are the official Medicare guidelines to meet for qualification:

Medically Necessary:

Non-invasive positive pressure respiratory assist devices (BiPAP) are considered medically necessary for any one of the following disorders, (subject to specific criteria for each respective condition – see further information below):

Restrictive thoracic disorders, (e.g., progressive neuromuscular diseases or severe thoracic cage abnormalities); or
Severe chronic obstructive pulmonary disease (COPD); or
Central sleep apnea; or
Obstructive sleep apnea (OSA).

For Restrictive Thoracic Disorders

Medically Necessary:

The use of a non-invasive positive pressure respiratory assist device (BiPAP) for the treatment of restrictive thoracic disorders is considered medically necessary when ALL of the following criteria are met:

The member has been diagnosed with a progressive neuromuscular disease, (e.g., amyotrophic lateral sclerosis [ALS] or a severe thoracic cage abnormality, [e.g., post-thoracoplasty for TB]); and
COPD does not contribute significantly to the individual's pulmonary limitation; and ONE or more of the following criteria are met:
An arterial blood gas PaCO2 level is greater than or equal to 45 mm Hg, done while awake and breathing the individual's usual FIO2 (fractionated inspired oxygen concentration); or
Sleep oximetry demonstrates an oxygen saturation less than or equal to 88% for at least five continuous minutes, done while breathing the individual's usual FIO2; or
Maximal inspiratory pressure is less than 60 cm H2O or forced vital capacity is less than 50% of predicted (for those with a progressive neuromuscular disease only).
Note: When the above medical necessity criteria for individuals with the indication of a restrictive thoracic disorder are met, a non-invasive positive pressure bi-level respiratory assist device, either with or without the back-up rate feature, will be considered medically necessary.

Not Medically Necessary:

The use of a non-invasive positive pressure respiratory assist device (Bi-level either with or without the back-up rate feature) for the treatment of restrictive thoracic disorders is considered not medically necessary if ALL the above medical necessity criteria are not met.



So, like CJ said about her husband, if it takes you being "weak" at your next appointment at neurologist, when your fvc is tested, then so be it. Because, if you're having headaches, it means you're not getting rid of co2. That's not healthy for anyone.
 
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Rose, Thank you so very much, that totally lets me know all the details, with which I can also use to my advantage, to get the help I need.

The information is priceless, hope it also helps others that may be struggling also.

Thanks again, sooo much
 
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