[bythesea]

My clinic FVC scores were above 90 in March, 70 something in June, and below 50 just the other day. Does this seem an overly fast decline. Freaking out.

[♥ sadiemae]

Noel,Do not freak! There are so many reasons for a low FVC, a bad lip seal for one. Some one on here stated that it is possible to have incorrect low numbers, but not incorrect high ones. My husband was at 51% in April, when we went back in June it was 68%. The new doc we are seeing in San Fran said the condition of your tongue can give a low FVC score. It is a very subjective test. A low FVC does not always mean that your breathing is getting worse. In our case the doc said his tongue is getting worse not his breathing. There is a recent post about SNIP, by Danjella that adresses this very subject. I posted the link, it will show up sometime.

[♥ sadiemae]

Question about SNIP (nasal inspiratory pressure)

[♥ Danijela]

It seems a steady decline, but as it has been pointed out if your lip seal is not good due to bulbar symtpoms the values may be falsely lower. FVC is not the only available test. Respiratory specialist should offer further testing and provide Bipap if required.

Personally, I would want to know if the figures are correct (re-test) and would no wait until FVC gets any lower to seek assistance. Insertion of PEG, for example, can be more complicated (and has even been refused!) due to a low FVC. Also, my understanding is that anything below 30% requires extensive use of Bipap (some people with very low FVC use it 24/7) or a discussion about venting. Joel always writes about the advantages of early venting versus waiting for an emergency to occur.

Having said all this, some people's FVC (judging by figures on Patients Like Me) seem to steadily decline up to a certain point, and then remain stable for longer periods of times.

All the best, Dani

[♥ CAHPAH]

My wifes FVC declined 5% per month for 14 straight months then 2% for 2 months and now seems to have leveled off at 24% for the last 4 months. She does well with using her bi-pap at night and some during the day. We had a PT tell us early on that she had MS patients with FVC as low as 8-10%.

[♥ Miss]

Boy this is reassuring. My husband was at 125% in February, 80% in May and is now at 55%.

[Lavender Lady]

Is it possible this may have something to do with his anger outburst? Sorry all this is happening for both of you.

[♥ CAHPAH]

If it helps, I read a study on line recently that showed FVCs where not a good indication of mortality since they do have a tendency to plateau. The study showed the MIPs and MEPs where a better indicator but even that was based on a pecentage of normal and normal had a range of around 30 cmH20. So unless you new where you started that isn't much good either. After that I just decided maybe I should stop trying to figure out when Serena might die and simply enjoy the time we have left together.

[♥ TedH5]

Jim I read something similar but what I saw was that a number below 60 for your MIP was below normal. I know the clinic used my MIP# which is in the 40's to qualify me for a bipap.

[♥ CAHPAH]

Ted, what I meant was this study showed a range of 30 cmH2O in normal people not that the MIP was at 30 cmH2O. I don't recall the exact numbers but the "normal" range for MIPs in this study was like -60 to -90 cmH2O. What the study showed was that when folks reached a certain percentage their normal MIP, morbility could be predicted to a higher degree of accuracy then just using the FVC. Sorry for the confusion.