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Old 12-19-2008, 04:01 PM   #1 (permalink)
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Hi all,
Have been concerned on and off for years about the possiblity of ALS. Just had a sleep study and they said I do not have apnea. although I do snore but the doctor is concerned about a low oxygen saturation and said we need to find out why. Of course, I'm worried that this could mean ALS. He did say it could mean COPD or many other things. My level during the day has been on the lower end of normal 92-94 during the day. Didn't mention this to him, (he's a new doctor). Would I have other symptoms first if this was ALS, i.e. weakness in my breathing muscles, which I don't? I'm very worried, please help. Have been to many neuros over the years, have r/o ALS but never had an EMG. I have always been afraid to. Thanks, Heather

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Old 12-19-2008, 05:18 PM   #2 (permalink)
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Heatherjoy,

Hopefully you'll get some good information from others here on the board. I'm not a doctor (nor have ALS), but if the only symptom you have is low oxygen saturation, then I think you shouldn't be worried about ALS. There are a lot of things that can cause low saturation levels, and you mentioned COPD yourself.

I am curious though. You say you've worried about ALS off and on for years. Has the breathing difficulty been going on that long? If so then I would say that you certainly should put ALS out of your mind. Going years without symptoms spreading to other parts of the body certainly points away from ALS.

If the breathing difficulties are more recent, I would ask why have you been worried for years? Did a family member of friend have ALS?

Robert
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Old 12-19-2008, 05:39 PM   #3 (permalink)
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I have had twitching for years (30 plus) on and off along with pins & needles, etc. I have had a lot recently and have only known about the oxygen levels being low for the past couple of years. I have snored for probably 10 plus years. I'm just so worried that the sleep study showed the oxygen level lowering when sleeping w/o apnea and now they're going to test to r/o reasons why. The only one that really frightens me so much is ALS. Also, I have no symtoms of COPD. Thanks so much for your reply. Heather
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Old 12-19-2008, 10:04 PM   #4 (permalink)
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It doesn't sound like ALS to me either Heather. Quite a lot of people's O2 levels will drop when they sleep as you breathe shallower and are not moving as much air in and out. Most people with ALS have some sort of weakness before they get breathing problems. If you lay on your back, do you find it hard to breathe? Do you get winded if you walk up a flight of stairs carrying a laundry basket full of clothes in front of you? Did the doc say how low your 02 level went at night and did they check for CO2 levels?

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Old 12-20-2008, 11:28 AM   #5 (permalink)
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Default oxygen level

Thanks so much, hardly slept last night due to worry. Al, no not really hard to breathe when laying on my back (I just snore more). Yes, sometimes get winded when walking up a flight of stairs, etc., but have noticed this off and on for years. Noticed I seem more winded talking when my husband and I go on walks or hikes then he does. But this too has been for years. I have had periods where I felt I couldn't breathe for a few minutes on and off for years also. Have had a lot of heart tests lately due to high bp, all negative. Was thrilled with results of tests until this sleep study. Also, was in the hospital a couple times a couple of years ago and the nurses would mention on and off that oxygen saturation level was "low normal" and asked me if I took oxygen at home. Don't know prior to that what the level was. Just finished a slew of testing for labile blood pressure (bp spikes and hard to control). Now more testing to see why oxygen level drops during sleep. I don't really have any weakness that I know of, however, am freaking out wondering if my diaphgram is weak from ALS and causing this. Thanks so much for you help. Have really worried, especially over the last few years when I have "twitching", etc. I'll go through periods where I'm sick with worry; I think this last one brought on my blood pressure crisis that ended me up in the hosptial 4 times. Thanks for any more thoughts. Heather
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Old 12-22-2008, 09:14 AM   #6 (permalink)
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Hi Heather- I hear your concern but even if your low oxygen levels are due to muscle weakness, it still does not have to be ALS. They can test for diaphragm paralysis and it is a simple and quick "sniff" test. You literally sniff air in through your nostrils while they watch via x-ray.

Also- if you have worried about ALS for years maybe it is time to let this worry go. Fear can poison your mind.

Good luck and let us know how this works out. Cindy
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Old 01-08-2010, 10:54 PM   #7 (permalink)
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Default Re: low air saturation in sleep study

Hi, me again, a little over a year later. I finally got my bp under control (a fantastic cardio guy), but my oxygen saturation level stays in the low 90's (acutally I think it's been this way for at least 5 or 6 years.) Awful lung doctor diagonosed sleep apnea, then copd then pulmonary hypertension, after all the tests it was none of these. My cardio doctor did a right cath and I have dystolic dysfunction which the pulmonary doctor said is "moderate" and is causing the low oxygen sats. The cardio disagrees, as he says it's mild. My primary care doctor is scheduling another sleep test and lung functions at another place, probably in a week or two. I'm still concerned it might be ALS since there's no definite diagnosis, (I've read it can start in your lungs). I'm frantic right now! I don't have any weakness that I know of, however, my hands have been falling asleep at night, (I notice it upon wakening). They've done this before but it's different this time. Also, if I sit too long at computer, one or the other foot will fall asleep. I've had BFS syndrome for over 30 years, fasciculations, etc., always a clean neuro exam, but this lung oxygen is scaring me, since they really don't know the cause. It's still within normal limits, only low. 90-95, I think it goes lower at night. I'm 58 and overweight, that was mentioned too. The low oxygen level and hands falling asleep, (read this happened to one or two ALS sufferers at the beginning frighten me. Please give me your thoughts. I've spent the day in tears. Oh, the reason that I went to the neuro again last year was for "sleep starts" which were knew to me. He suggested a sleep study, which indicated a low oxygen level. Please help. Thanks. Heather
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Old 01-09-2010, 11:21 AM   #8 (permalink)
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Default Re: low air saturation in sleep study

They did a arterial blood gas test (I think that checks co2 right?) It was normal. 6 minute walk was where oxygen sat fell, (didn't tell me how much). Also was low at times during sleep study, periods of high 80's but no apnea. A mystery. thanks all, again I really appreciate your help. Also, since I bought my own monitor, I see it drops sometimes to high 80 laying down watching tv. Ususally stays up to mid 90's when walking around. Just wish the doctor hadn't kept writing false diagnosis (that he later said I didn't have), but in the meantime told me to do my own research. Just the kind of doctor I don't need......Blessings to all. Heather
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