Drastic change in breathing

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karzy81

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Hi everyone. My dad was diagnosed March 2018 with ALS. He has limb onset. His breathing, swallowing and talking have not been affected as of yet. ... so we thought. Today he had a breathing test. His score is December 2018 was 92 and today it was in the low 60s. That seems like a drastic change for someone that hasn’t felt any breathing issues up until now. He did have a pulmonary embolism in December and is currently on blood thinners but I’m not sure that plays a role. He also usually does his tests at the clinic in the afternoon as he is not a morning person. He did the test just before ten today. I guess I am just trying to find reasons as to how it dropped so fast. Does this mean it will continue to drop at that rate? Thanks everyone
 

patrick123

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It's not uncommon, my FVC dropped from 92 to 68 over a 5 month period. I also had limb onset, but it seem to hit my diaphragm muck quicker. Speak to you pulmonologist about a Bipap.

Patrick
 

Nikki J

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The pe may be at least partly the issue. https://www.sciencedaily.com/releases/2017/03/170320143820.htm

My sister ( no pe) went down 30 points between clinic appointments and continued to drop every 6 months by 25 for the first years. It did level off after that for some time.

Time of day, fatigue, time after eating, quality of mouth seal all factor in. Would it make a 30 point difference no but could be a factor
 

KarenNWendyn

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A lot depends on the size of the pulmonary embolism. Sometimes people can even get a showering of multiple small pulmonary emboli leading to something called pulmonary hypertension. This definitely can impact breathing test results. The blood thinners should help prevent further clotting episodes.

In any case, BiPAP may be helpful at this point.
 

karzy81

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I am pretty sure when my dad was admitted to the hospital in December for a pulmonary embolism they said there were many of them, not just one. I just find it weird that he hasn’t noticed a change in his breathing yet it went down so much.
 

lgelb

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As pointed out, it can reflect a real drop (that he wouldn't necessarily feel) and/or several factors including the PE. I would certainly ask if he has had a recent echo. But agree BiPAP is a logical next step either way.

Best,
Laurie
 

Kristina1

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I will add that it is also fairly common to be in the 60s and not have symptoms/shortness of breath yet. My pulmonologist warned me that that often happens, and then my own FVC dropped from high 80s to low 60s from one clinic visit to the next and I was shocked because I had felt no change.
 

KarenNWendyn

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If we were able to be more physically active in terms of exercise, we’d be more likely to notice the changes in our breathing.

My FVC also went from the high 80s to low 60s without noticeable difficulty breathing, but I’m also way less active than I’ve ever been. :-(

Sometimes the main symptom is fatigue. Sometimes it’s not sleeping as deeply. Or headaches.
 

KimT

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I wouldn't guess. I would get a complete pulmonary function test to include MIP, MEP, MVV, and SVC. With his history, he needs to have the complete picture.
 

ReginaS

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My pALS' FVC was over 100 in Feb. 2018, it had dropped to about 70 6 months later and when it was last measured it was about 44. He does not experience any air hunger unless he lies down flat or not raised up enough.
He now has trilogy but he only used is for 23 hours in the last 2 months - I just checked today.

He was diagnosed w. limb onset but also had bulbar weakness rather early on. We would love to know what the future will hold and how things will develop next but honestly, the general uncertainty keeps me in the present - I just know it's going downhill at a steady pace. We never experienced any plateaus. By now he is very hard to understand and increasingly uses eyegaze technology.

So glad it's spring now!
 

lgelb

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Even if he has full PFTs, it's still "guessing" to an extent how much air he can move in/out compared with how much he needs at any given moment. Because the muscles used in breathing and processing that air are numerous, two people could have the same FVC and have very different levels of accommodation.

So PFTs aren't the full measure of whether someone needs BiPAP now, today.

That reality is reflected in Medicare's either/or coverage criteria for BiPAP in PALS, which don't require full PFTs. I've edited for brevity/format in plain text and added some notes.

An E0470 or E0471 device [BiPAP] is covered when:

There is documentation in the beneficiary’s medical record of a neuromuscular disease (for example, amyotrophic lateral sclerosis) and one of the following:

(a) An arterial blood gas PaCO2, done while awake is greater than or equal to 45 mm Hg [this would show significant CO2 retention],

(b) Sleep oximetry demonstrates oxygen saturation less than or equal to 88% for greater than or equal to 5 minutes of nocturnal recording time (minimum recording time of 2 hours) [this would show low oxygen levels]

(c) Maximal inspiratory pressure (MIP) is less than 60 cm H20 [this would show not being able to take a deep breath]

(d) Forced vital capacity (FVC) is less than 50% predicted [current research suggests much earlier]

Bottom line -- treat the PALS, not the numbers. Not just for karzy, but more generally -- if needed, ask the clinic to try as many tests as needed as per above to justify BiPAP reimbursement.

Or, as a not-necessarily-last-resort, remember that any doc can write a script and you can pay cash for a used one (never hurts to have a backup, either), if need be.

Best,
Laurie
 
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karzy81

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Thanks so much everyone. We are back in to the clinic next week to meet with the respiratory specialist. Our neurologist said it’s possible that the FVC didn’t capture his best effort. I guess, as mentioned earlier, there are many factors that could have an effect on the results. Everything is just so uncertain and we are all looking for answers and ways to process everything that happens. The fact is that there is no answer. There is no way to gauge what will happen next. It’s very frustrating but it’s nice to have people like you who try and offer as much insight as possible.
 

karzy81

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Hi Laurie,

I haven’t really figured out how to respond here but thank you very much for all your insightful responses. Thankfully we live in Canada so all of the therapies and interventions are free. I know it must be frustrating to hear all of this looking for answers when there really aren’t any. Either way thank you so much
 

jethro

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this is unpredictable, like many things. i coughed 3 years ago, unbearable, choked, and 3 years after that i have fvc 102%... now? i dont want to check. deterioration dynamic is individual. but for sure, it is linear (let's say "predictable") ONLY in a latest phase.
 
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