heatherjoy
Member
- Joined
- Mar 24, 2008
- Messages
- 10
- Reason
- Other
- Country
- US
- State
- NV
- City
- Las Vegas
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
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