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bluebottle

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I have a question and hope you learned peeps here may be able to assist.

My original results of forced air was well above predicted. I think it may have dropped a little since, probably due to the reduction in physical exercise. I have done 3 overnight oximeter tests done with results coming back as normal - all good news, however I keep getting a strange breathing feeling like I am recovering from a sprint. I don't have morning headaches but do get very sleepy during the day. My question is how did breathing symptoms start? Did you notice first or did an overnight oximeter test pick it up first for you?

I am tested regularly as my voice sounds breathy and low in volume but I don't appear with tests to be having breathing difficulties? I am confused.

My oximeter test has reduced slightly from 99% to 94% while I was awake and just before I nodded off but no drops during sleep. Any ideas?
 

Jennifer51

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Hi, I went to the London chest hospital a while back and forced air for 78% which was higher than I expected. I do get monring headaches but not all the time and I have always been a headache person anyway. I bought a breathing exercise gadget (ultrabreathe) as recommended by someone on this forum. Since using it, the number of breaths I can do on it has diminished considerably. I also have the puff thing that they use on kids with asthma to test breath...you know the one you have to give a huge breath in. When I bought it last summer my breathing could puff it up to 300, now I am lucky if I make it up to 200. I have also noticed lately that sometimes my toes are turning a bit black...I think that is not a good sign. I have not done the overnight study yet, one doctor said to do it, then his superior said with a FVC of 78% it was not needed now, he said I should do it if it dropped to about 50%.
 

AHands

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personally, i first realized that i had breathing difficulty in April '08 when they tested my fvc at 67%, after three years of limb atrophy. i was astonished by the finding. they said that my fvc had been 100% just five months earlier. it continued to drop--42% by end of 2008.

i think that here in the states, a bipap is recommended if you are below 50% fvc, but you can get it sooner if you have sleep apnea. if you MIGHT have apnea, get the sleep study asap--don't wait until you're below 50% fvc.

note that % fvc is based on an "expected value" which is solely a function of (1) gender, (2) age and (3) weight. it does NOT consider previous physical conditioning. a fit person can be way over 100%. an otherwise healthy yet slothy person can be way under.

saturation, as measured by an oximeter should be 95-100%, but they consider 90-95% to be "okay". mine is 93%, even with fvc < 50%. i am attempting to improve it through light exercise, posture, diet, massage and conscious/yogic breathing.

fingertip pulse oximeters are commonly available and inexpensive--$50-$100 USD.

note that the oximeter measures the oxygen saturation of your blood (percentage of arterial hemoglobin in the oxyhemoglobin configuration). saturation, unlike fvc, cannot be > 100%.
 

Al

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Hi folks. We're missing a very important part of the ALS equation here and that is Carbon Dioxide (CO2) level. It can be measured by an arterial blood gas (ABG) test, most accurate, or a meter attached to the skin. High levels of it cause the headaches and drowsiness. You can have high FVC's and high CO2 and feel like crap and not know why. If you have your sleep study in a lab that is not experienced with ALS they may not check CO2. Levels of it don't show on the breathing tests done at the clinic either.

AL.
 

bluebottle

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Thank you for all your replies, from which i am starting to understand.

So it is possible to have symptoms and have ALS affecting you in the guise of CO2 but the forced air and oximeter tests are not necessarily going to be the tests to pick this up. The ABG test is probably the one to get down on a regular basis?
 

Al

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The ABG is not fun. They stick a long needle into your wrist to catch the arterial blood. It's fairly deep. I've only had 2 and had very good tech's that got it first try so very little discomfort. I wouldn't want one every month.

AL.
 

linray

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Hi Al,
Thanks for the info. My husband's fvc is at 70 which the doc said is not at a dangerous level yet. However, he has morning headaches, drowsiness... none of which he has even been asked about. I will surely mention it now.
Linda
 

Jennifer51

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The ABG is not fun. They stick a long needle into your wrist to catch the arterial blood. It's fairly deep. I've only had 2 and had very good tech's that got it first try so very little discomfort. I wouldn't want one every month.

AL.[/QUOTE

Hi Al.... I am new to the fvc tests and have only had one, and I am nterested in the ABG test. In london they stuck some aneasthetic cream on our ear lobes and left if for about half an hour and then took a load of blood, do you think that was the same test or something completely different.
 

AHands

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YES Lin,

Please DO tell your Dr about the morning headaches and drowsiness--those are classic sleep apnea signs. Even more so if he's heavy or is a loud snorer. Make sure the sleep study people know about ALS and get him a BIpap (not Cpap). I would agree that 70% fvc isn't very noticeable, but 50% fvc can be really...dismaying, and he could be there in a few months. Do everything you can to preserve breathing now. Stay away from anything and everything that could harm his respiratory system.

I'd give up both hands to get my lungs back.

Don't be scared, stay positive.
 

trying to stay positive

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I am a little confused. Can you have a good blood oxygen level with the overnight oximeter test but still have a high CO2 level?
 

Al

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Hi Jennifer. I've never heard of that but during my sleep study's they put the CO2 probe on my earlobe so they may have taken blood from there to get the blood gases. From my understanding of how it works Linda you can have good O2 sats and still have high CO2. It was a few years ago but I think I recall them saying at one point my O2 was at 94% and my CO2 was 45%. I wouldn't bet my life on those figures but think that was what they said.

AL.
 

bluebottle

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I have also had that warm cream put on my ear and then blood drawn from my ear lobe - that isn't pleasant either but better than Al's wrist test! I have researched what a normal CO2 level is and what is a concerning one? What did 45% mean you you Al?

'What do the test results mean?
The normal value for CO2 in the blood is 23 to 29 mEq/L. Most of the carbon dioxide in the blood is in the form of bicarbonate. Either term can be used. The lungs and kidneys control the amount of bicarbonate in the blood. This keeps the blood from becoming too acidic. In order for a person to live, he or she must have neither too much acid nor too much base in the blood.

Carbon dioxide or bicarbonate can be too high or too low in the following conditions:

Kidney problems
Breathing or lung problems
Poisonings or drug overdoses
Severe diarrhea
Uncontrolled diabetes
Severe dehydration '

My experience here in the UK is that levels are not disclosed to you and just get a good bad or indifferent result.
I am trying to decide whether to make the effort of keep attending clinics to have my breathing tested or whether it is OK to leave it for a while until i start to feel really breathless.
 
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