Hey guys,

I was just wondering...When your neurologist/pulmologist checks your FVC, do they normally put a nose plug on you?

I'm asking because I have constant palate weakness, so when I exhale, most of the air comes out of my nose...Whenever my neuro. checks my FVC, they don't use a noseplug, and I don't realize this until after the appointment, so I forget to 'remind' them...When I was in the hopsital, though, they almost always used a nose plug so this caused my numbers to be much higher...Anyway, it always looks like my FVC is really low (I think that mine was 1.25 this past Monday when I saw my neuro. for follow-up, so they're giving my another plasma exchange) when I see my neuro., and I think that it's because of this.

So is it normal to have a noseplug put on when doing this test? This has happened quite a few times, with different people, when I've had to do this test (the not putting the nose plug on), so it almost seems like it's 'normal' to not need it...

Nicky

Nicky, I'm sorry but the first mistake is that fact that your NEURO checks your breathing!!! His mistake, not yours. You need a pulmonologist. I cannot stress that enough. They are the experts in that area, not the neuro. AND he should not "act" like a pulmonologist. Very dangerous - for him and you.

Is he a board certified pulmonologist?!!! Would "you" ask an endocrinologist to be an OB/GYN? An infectious disease doctor to be a rheumatologist? I'm not angry at you but at your doctor for not referring you for better, more specific testing. And an arterial blood gas, if that's necessary.

Yes, you absolutely need a nose plug when doing those tests.

I'm sorry you aren't doing well. I hope the plasma will help.


Annie

Thanks, Annie...

Yeah, I figured that the noseplug makes a big difference...Maybe they keep forgetting because a lot of the patients don't have such bad palate weakness, so they don't think that it's necessary (or forget that it is)...

Yeah, I really need to see a pulmonologist....Is 1.25 really bad?

Ttys!
Nicky

P.S. Thanks for the luck re. the plasma exchange. If it goes like the last one I had, I'm gonna need it!

Well, you guys in Canada have different reference ranges!!! Not sure what those numbers mean. Even if I did, I'm no expert. A pulmy has to look at lots of different things to determine that.

I hope it doesn't go badly. I can't imagine - it must be traumatizing.

Nicky,

I totally agree with Annie, that it would be advisable to have a pulmonologist involved in your care, and prefrably one with a good understanding in neuromuscular diseases. as most neurologists don't have a good understanding of respiratory problems, and they can only do a very rough evaluation, which does not always suffice.

further more, you may benefit from nocturnal respiratory support. it may not only improve your breathing ability, but also can effect your swallowing and talking.

as much as it may sound scary at first, to use a respirator, it can significantly improve your quality of life, until your illness is under better control.

it is true that if you have significant weakness of your palate, it can make the VC appear much lower then it really is, but this in itself is a reason for treatment, as it can lead to aspirations.

alice