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heatherjoy

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Hi,
I've written here before and you have been kind enough to answer me. I've had BFS symptoms over many years, (twitches, etc.) & have been through the MS/ALS scares.
A couple of years ago, due to "jerking awake" at night I had a sleep study. My posts are on here (low oxygen level but not apnea). I just had my follow-up, after a year, (with a new dr and sleep study as the former Pulmonary dr. kept diagnosing prior to tests, i.e. copd, pulmonary hypertension, sleep apnea, etc. and then it turned out that I had none of these.

During my sleep study, (split study) my oxygen level started out as 95 but shortly after I fell asleep they woke me up and up me my oxgen (said it was in low 80's). Then 1/2 though when they put me on Cpac (it had been ordered by my dr as part of study they added oxygen with that as well.) I've bought a home monitor and my oxygen saturation level will be anywhere form 90 to 97 during the day. If I lay down it's lower & if I fall asleep with the monitor on my finger and wake up it's 86! Then it'll go back up as I start breathing more. I won't get my "formal" results for 10 days and I'm frantic. It seems to me that in one year it's progressed from a brief low of 89 while asleep to staying in the mid 80's, possibly lower if they hadn't given me oxygen. All other things have been ruled out. Could this be weight related (I have gained weight and it's in the "belly region" , but not since the last sleep study! Does this sound like ALS? If so, will I need a Bi-pac or resirpator during the day, since my daytime level is "low normal"?
I feel not, only do I have ALS but I'm one of the few that have it beginning in the respiratory system. PLEASE PLEASE answer. I feel so afraid, that not only do I have it, but in a few weeks I'll be on a respirator. Thanks. Heather:confused:
 
I don't think that sounds like ALS . I stayed right by my mothers side that whole time she has ALS and what you are saying doesn't put a sign out there saying you have it. I have done that in the past. My legs jumped and jerked so bad it would wake up my husband and scare him and he is a heavy sleeper. It was my nerves I was under a lot of stress. I wouldn't worry much. I think it is going to come out good. Hugs to you Debra
 
You would be far better served to ask these questions on a CPAP board or a respiratory disease board. Respiratory onset ALS is extremely rare.
 
Try putting a couple of chunks of wood under the head of your bed. About 4-6 inches. If your breathing is better, you'll need to lose the xtra middle or might need a Bipap.

AL.
 
Thanks Al---just woke up with the gadget on my finger & it read 84.....It varies wildly throughout the day but usually stays to 90. I've read that 16% of ALS starts in the lungs. Since they've r/o the other heart/lung issues does this sound like it could be it to you? Thanks, Heather Joy
 
Do you have a link to a site that supports your claim that 16 percent of ALS starts in the lungs. The only information I can find puts that number at less than three percent.

You really should be pressing your pulmonologist for some answers so you can move past your obsession with ALS. If you had ALS two years ago when this started, you would be showing many more symptoms now and your pulmonologist would have long since referred you to a neurologist.
 
HeatherJoy, Your symptoms sounds like a simple Hypopnia; you need to discuss your sleep study results with your doctor.
With AlS your oxygen saturation level will go down by simply getting in supine position, in your case you de-sating when you go into REM sleep (deep) sleep.
Good luck,Erica
 
Thank you for your kind responses. Trofogey, I have heard that it is very uncommon for ALS to start in the lungs also. Just recently I read the 16% and don't have the link (I've googled so much about it), I'm not even sure at this point if it was a "medical statistic" or off of a forum, possibly where someone was misinformed. Thank you, as the smaller percentage the better I feel, and I'm sure you're siting reliable sources. My primary care doctor is currently setting up lung function tests & will compare to my old ones and if necessary refer me to a new pulmonary doctor. This last pulmonary man diagnosed me with all sorts of lung conditions, told me to "Google" them & left the room. Each one has since been r/o, so I can't trust him at all. I had a right heart cath which showed some "stiffening" of the heart muscle (cardiologist said it wouldn't cause oxygen symptoms), however Pulmonologist said that's his "current" diagnosis and that's that.

Erica, my oxygen level is and has been on the low end of normal during the day for at least a couple of years, possibly more. It also decreased on my six minute walk at the Pulmonary doctor's to below normal over a year ago, but I monitor it when I exercise and usually stays within low normal limits. My oxygen level does usually decrease somewhat when I lay down, although not nearly as much as during sleep, maybe 1 or 2 points on the average. I've read and am hoping that this is normal, especially when there's some abdominal weight, which I'm ashamed to say that I've gained quiet a bit in that area. I do so much appreciate everyone's kindness in "talking me down". Appreciate any further input. Blessings, Heather
 
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