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jellis86

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Joined
Jun 22, 2012
Messages
256
Reason
PALS
Diagnosis
02/2013
Country
US
State
WI
City
Eau Claire
Hello All,

I went to my first ALS clinic appointment at the VA Hospital in Minneapolis, MN.

1st off let me state that the level of care I received there, for the most part, was as good as or better than the ALS clinic at the Mayo Clinic. They both have their good and bad points, but I was impressed with how knowledgeable and courteous each person was.
The clinic ran from 8:30 AM until 3:30 PM, nearly twice as long as my clinic appointment at Mayo in Feb.

Two things I didn't like, they performed a Pulmonary Function Test at 8:30 AM and my FVC was 60%.
It was considerably lower than the test I received just a few weeks ago at Mayo, 2:00 PM, when it was 71%. The main difference I believe is what time of day the tests were administered. I have read that we all have lower FVCs early and late in the day and it's best around noon, or slightly afternoon.

I'm not saying that the test isn't accurate, but my breathing has not gotten any worse in the past few weeks. In fact I have noted a slight improvement since being on my 2 most recent meds, Rilutek and Amitriptyline. I started both back in Feb. 2013. I especially notice an improvement while laying on my back, before it was quite labored, now much less noticeable.

Wouldn't I be able to notice a reduction of 11% just in my day to day activities?

The other thing that kind of irked me was the speech pathologist telling me that Bulbar onset patients never progress to the point of needing eye gaze, or other types of text to speech devices. He said Ipad and other such devices are all the farther Bulbar ALS patients get to since they never completely lose their ability to speak somewhat....I assume he meant before they die, although I didn't inquire further.

Is that correct, Bulbarians (sp) die before getting to the point of needed advanced communication devices? Or did he mean Bulbar patients speech never progress to the point of needing them? The latter I find doesn't fit what I have read here and other places.

Just curious on these issues.

More snow for us here in northwest WI tomorrow....I'm sick of it?
 
"Jellis86",

I don't know what to tell you about what your speech pathologist told you at the Clinic.
My diagnosis, as yours, was also Bulbar-onset ALS and, that was in Dec. 2011.
Over time, I have come to notice myself that my speech is less clear than it was when I was diagnosed. I do notice that people around me at home, have more problems to understand me when I talk; they say they can only hear noises when I try to talk which has made me more iPad-Proloquo2Go dependent whenever I need to communicate, even the most single words.

I believe that the pulmonary capacity has much to do with the speech as you need enough air in your lungs to produce the sounds necessary for talking as your tongue is atrophied.

FVC in the other hand is kind of a tricky number.
For example, when I was diagnosed in 12/2011, my measured FVC was 73%.
A month after that, during my first visit to the Clinic, FVC read 85%.
During my next visit to the Clinic (4 months after my first visit), FVC read 72%.
Subsequent readings haven't shown a clear pattern (75%, then 57%, then 63%, then 68%).
I now stand at 68% FVC per my last visit to the Clinic in Nov. 2012.
My next visit to the Clinic will be next month so, I shall see how my FVC values have changed.

The interesting thing is, my Oxygen(O2) levels have never gone below 98% every time they have it measured at the Clinic and, at home, I can lay flat on bed or even on the floor and I haven't felt shortness of breath nor I wake up at nights nor have headaches in the morning.
You see? Something doesn't correlate between the FVC levels measured by them and how I actually feel.

Note, I am not on Rilutek just yet. I have read it can unsettle your liver enzymes values and the benefits you would get from it are modest.


Hope this helps.


NH
 
Thanks for your input Nighthawk!

At the time you were diagnosed, my speech had just started it's decline. On the other hand, my breathing was really no different then than it is now...a little winded going up and down our basement stairs a few times and while laying flat on my back....of which the breathing while laying has improved.

It seems to me, and this is just MY OPINION, that the FVC depends on quite a few aspects...time of day, person performing them, and probably other influences such as a cold, tired, etc.

You mentioned your O2 levels never going below 98%, those are great readings. Yesterday they did an oximetry test and I fluxated between 95 and 99%.

I had an overnight oximetry test performed in late February. Levels on 2 occasions dropped to <90%. The rest of the night they maintained between 90-98% O2 saturation. This was without a cpap or bipap.
The sleep clinic at Mayo also did an an arterial blood gas test in mid March....all reading were nominal. Nothing indicating a higher than normal level of CO2 or a lower than normal level of O2.
I guess when it's all said and done, it can be safely said that everyone will fluctuate from one test to the next. But when it is such an important test, leading to feeding tubes, etc. I would think that the arterial blood gas test to be much more accurate than the pulmonary function test. Again, just my opinion.
 
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Yeah, I know exactly what you mean about the %FVC values.
When I have been to the Clinic and I am anxious or somewhat nervous, my FVC values come out low and the Pulmonologist has to repeat the test several times to make sure he's getting the right values. For example, during my last visit to the Clinic in Nov.2012, the first time he tried to read my FVC, he got 49% but...I was kind of anxious and he took notice of that, and repeated the test two more times, ending up with a more realistic value of 68% which was the one he deemed more accurate.

So, I don't have that much confidence on just...numbers, but the way I feel how is my breathing doing at any given time.

Regards,

NH
 
I've learned to ask when the last time the handheld meter was calibrated. Just a thought. I agree how we feel is much more important.
 
Yeah, I have seen as much as 5% difference from one oximetry tester to the next. I've also had some Doctors tell me that 95% and above good values while others say 90% and above are good values. So whom do we believe...

I think we all can agree it's about our own feeling/condition over one or two weird test results. I think I'll know when something drastic is happening to me, unless there is something about this disease that takes away our knowing how we feel from day to day.

I can honestly say that for me, the first 30 or so minutes I get up in the morning are the worst. If and when I start to feel like that all day, and I don't improve over time, I'll know something is wrong, or more wrong!
 
My diagnosis is bulbar PLS rather than ALS. No one has ever told me what my FVC numbers are. When I asked for a copy of my original pulmonary function test, all I received was a two-line document that said the results were inconclusive.

At my early visits to the ALS Clinic (OHSU, Portland, OR), I was asked to blow into a hand-held spirometer. I explained that I could not do this because I am unable to make a seal around the tube with my lips. I was told to do the best I could and apparently failed miserably. My neurologist ordered a sleep study; the results were good, showing no significant drop in oxygen levels during the night. The pulmonologist recommended that any future testing be done by use of an oximeter that records oxygen levels throughout the night. This device could be used at home. I am no longer required to blow into the spirometer.

My advice would be do not worry if you do not feel short of breath, do not have headaches or other symptoms of oxygen deprivation, and an oximeter shows good oxygen levels.

An earlier post on this subject described an alternate method of measuring FVC but, unfortunately, I don't remember what it was called. (Maybe I am suffering from oxygen deprivation.)
 
The alternate to the FVC test is called "SNIP." It is done with a tube inserted in the nostril. See thread "FVC Testing at Home" in the CALS section.
 
If you're unable to make a good seal with the tube to measure FVC you should be offered a different type of mouth piece.
 
@ "Old Dog",

Now that you mention it, there is a peculiar case of a PALS who also happens to attend to the same ALS Clinic I attend to (JHU).
He's a young male but he's completely paralyzed of his limbs and cannot talk at all, he was on a PWC (I would dare say he's probably on his late 30's) and he had already been seen by our Pulmonologist before he seeing me. When I asked his CALS (who happens to be his mother) how did the FVC test go for him, she said that he had read 0% FVC?
She added that he had always had problems with the sealing the mouthpiece around his lips because the weakness caused to his Bulbar muscles by the ALS.
Even with the mask (the Pulmonologist tried a mask on him instead of the tube to avoid leaking) the results were again 0% FVC.

His mother added that those numbers didn't really worried her because her PALS son didn't have any problems breathing at all. He didn't even need a BiPAP, she added.
When she left the Clinic I was scratching my head thinking how could that be possible?

S, bottom line, the FVC values are not a very reliable numbers to determine how compromised is your respiratory function by ALS.
I think I agree with some of you when say that it depends on how you really feel yourself , for example if you feel short of breath or have a lot of headaches in the morning or cannot lie flat on bed without gasping for air.


NH
 
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