fvc going up, mip and mep going down

[gooseberry]

Has anyone encountered this? Since the numbers have shown the change since diagnosed but over lsst few months are stable they arent so concerned.. They said a 10 percent decline in the tests show progression.

 

[MaxEidswick]

fvc is volume which breath stacking can improve; mip/mep are muscle measurements a measure of muscle atrophy ...

 

[gooseberry]

Thanks Max. I thought that might be the case but we forgot to ask yesterday. The doctor said he knew Steve was using the trilogy because the numbers were stable but I was thinking that isn't really right because with progression you could be using the machine but the muscles still atrophy. Am I thinking about this wrong?

 

[MaxEidswick]

>but I was thinking that isn't really right because with progression you could be using the machine but the muscles still atrophy. Am I thinking about this wrong?

no, unfortunately the muscles atrophy, the diaphragm doesn't pull/push into the fvc volume. ALS sucks.

 

[gooseberry]

Steve is using it more and more. He sleeps 12 hrs a.day or so and then will use it up to another 3-5 hrs. Some days no extra but others its 15-17 hrs total.

 

[Graybeard]

He's right behind me. I am now 24/7 on bipap. Going for trach asap. I still have to pay my taxes.

 

[tripete]

Doctors at last clinic recommended I use the bipap more than when I sleep, as by lunch time headaches will be bad and I just get out of breath so very quickly. Even though my numbers from the previous month seemed stable. I am only able to sleep a restless 6-7 hours.

Since the last clinic visit two weeks ago my hands, legs and arms are getting much worse and I am starting to notice bulbar symptoms, like tongue weaker when pushing on right cheek then left (they observed this at clinic too, it is just worse). I have read that there are times of more rapid decline -I wonder if that is whats happening?

I still do not show a lot of muscle wasting ((just a bit in my hands and feet) but I fatigue so quickly, including the loss of my breathing and voice.

I am sorry to hear of the increased need that all of you are experiencing. I wish we could stop this disease.

 

[Barbie]

I wish I understood the thing better--feel like a big dummy. I ask the RT how he is doing how the numbers look every month and she says find still in acceptable range. but what does that mean? doesn't need a trache? close to normal? what is acceptable? I can't really get a good answer and husband doesn't care and doesn't want to go to the Pulmonologist. I just know that he is needing it more. all night --and still tosses and turns, and during the naps now. gets "congested" during the day an likes the cough assist a lot .

 

[affected]

Barbie I think you are way smarter than you give credit to.

You are observing what is happening with your husbands breathing and acting accordingly. Knowing a bunch of numbers won't make you any smarter

 

[gooseberry]

That's the thing Barbie, as Steve continues to progress with the atrophy getting worse, breathing worse by observation, some numbers improve. Hooray...they aren't seeing him disappear before their eyes like Julien and I am.

 

[tripete]

Barbie, it gets so difficult to want to know anything. We are just always loosing everything and even though are loved ones and doctors want us to continue to "fight" there is no sense in it as we have already "lost". I am with him as far as sleep I toss and turn and just cant find any peace. My wife has had me taken melatonin the last few nights and at least I can get a restless 6 hours.

I have noticed as many of you have stated that my reality is different then the numbers would suggest. My hope in this is that maybe some where down the road, that the numbers will help someone else. I am sorry that you are loved one and caregivers of us who are doomed to death, have to deal with all this, and at the same time, I thank you for all you care and concerns.

 

[gooseberry]

Pete, I don't want to be anywhere else but by Steve's side. Yet it is hard to see someone ravaged by this disease. On the way home tonight from a.counseling appointment, my son listed all the physical changes in his dad over the last few months. For me, that's the worst because he really sees what is happening even when he doesn't comment on it.