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Active member
Jan 5, 2008
St. Paul
Good Friday Afternoon!

This morning we had our intake meeting with a home health agency so that we could start our respite care program courtesy of the ALS Association. Very excited!

It was the first time that my mom has had her temperature taken in AGES (they never do this at the clinic). Anyway, her temp was just below 96! And they took it a couple of times. Like many people living with ALS she goes from being hot one minute to freezing the next, tends to freakishly have one foot that it burning hot and the other ice cold. The nurse didn't seem phased by the fact that her temp was only 95.8. And my mom said she wasn't cold.

I can't seem to find much about what the affects of low body temp would be, or even if it's something ALS folks deal with, but I thought I'd see if anyone watches their temp much.

Also, as long as I'm here, they did one of those blood oxygen tests and she was at about 98%. Is this any sort of indicator we should be paying attention to? Her last blowing test with the respiratory therapist showed her strength at about 50%. Are these things at all related?

Any thoughts? Thanks so much!
Hi, Kaija ...

I don't know if this relates to als at all, or what your mom's normal temp is, but mine has always run below normal since I was a kid. But since I have been having all these bulbar symptoms, it's much lower than usual. I woke one morning feeling chilled, and found it was 94.4, which is in hypothermia range!

My "normal temp" since all my symptoms started is 95.5 to 96 when I wake in the a.m. (My speech therapist was the one who told me to start taking my temps every day for a few weeks to get an average, because if my temp gets up to 98.6, that means I've actually got a fever, and I've got to convince doctors that they need to check for pneumonia!)

Told the doctor about my low temps, and got no reaction at all. I feel fine, and they don't seem to cause a problem. I tried to find out about low temps online, too, but the only info I found was that below 95 it's generally a sign of illness.

Don't know about the lung fuction test, but my understanding is that 98% blood oxygen is GREAT! But I'm no doctor, and am new to ALS ...

Kaija, The FVC of 50% is low. However the 98% Oxygen level is great. Anything over 95% is good. That means her blood is getting enough oxygen.

My wife has a normal body temp of 96. Some people just have a lower temperature normally. I do have problems with my feet staying extremely cold, but that is related to the lack of blood circulating in that area of my body. My veins were damaged due to extreme swelling of the legs some time ago, due to being in the wheelchair all the time. They helped solve that problem with pressure stockings.

You will probably get more feedback on this later from others as the weekend comes to a close.
Thanks Beth and Capt. Al! I suppose we don't really know what her baseline is (or was, prior to having ALS) so I suppose we'll just watch and see!
may be hypothyroid?


Low body temperature is a symptom of hypothyroidism. It means that your thyroid is not producing enough thyroid hormone. It can can checked out with a simple blood test.

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