notme
Extremely helpful member
- Joined
- Apr 3, 2011
- Messages
- 2,605
- Reason
- PALS
- Diagnosis
- 08/2011
- Country
- US
- State
- Fl
- City
- Orlando
Not good.
FCV is low. O2 sats are in the 80's. They sent me home with an order for oxygen use at home.
He said he's sticking with the c-pap for now with added oxygen--pending results of AGBs and CT of chest. Will change it to bi-pap if the ABGs suggest I need it.
The walking for 6 minutes test was fun--not. I don't do exercise well. I wasn't surprised my sats dropped to mid 80's.
Saw the sleep study results--they still dropped even with the c-pap--hence, the oxygen addition he requested at night, I suppose. Also noted my heart is doing wonky stuff at night--lots of PAC's and PVC's. Might be time to re-evaluate my cardiac meds.
Got the results from the exam by the ALS neuro, too. I thought I had only UMN stuff going on--she said in her notes that I have both. Also said I had a spastic gait--I didn't realize that. Apparently I have abnormal reflexes everywhere--some absent and other areas where they are very brisk. Strange. Babinski was positive. The ONLY thing she put in her notes is MND -- I'm still hoping the MRI or other tests show some other reason for the junk going on. She did mention other possibilities to me--such as MS and something else I've forgotten now.
Still wondering--do I really want to know? We're treating my breathing issues, my scooter and walker are keeping me from falling--I'm back to not really being sure I want to know what's wrong. Just treat what comes up. MRI to rule out some nasty brain tumor or something makes sense...but not too sure I want to do a crap load of other tests at this point.
I only have to use the portable oxygen with any physical activity and at night--not 24/7.
He wants to see me in two months--or if my symptoms worsen.
Now we wait to see if the insurance will allow the oxygen--cuz I sure can't afford it otherwise. The company said they were delivering both tomorrow--but we'll see.
A major problem I'm noticing, besides the killer headaches--is a lot of confusion and forgetfulness. I feel like I'm losing a lot of my cognitive abilities. Will the O2 help that?
My body is going--i've accepted that--but I can't lose my brain power, too. I have trouble concentrating on a book. I read a post I want to reply to and can't remember the name of the person I'm replying to. I feel disconnected--and no, I don't think it's the meds I'm on--I've been on them for a very long time and am well adjusted to them. I have absolutely no patience. I'm short with everyone and don't even WANT to interact with people. The littlest things set me off. Not being able to use the toaster was the big issue today.
I drove myself to the appt. What a nightmare. I got lost--twice--with a freaking GPS. My leg kept jumping, I was terrified I was going to kill myself or someone else. I just have to give up driving--I'm not safe anymore. Whatever this is--it's affecting everything including my mind.
On a side note--my daughter was playing with my o2 sat monitor...my sats dropped--of course, I've known that. My pulse goes up to 140's with exercise--normal for me. But my daughters pulse? 160 from walking up 15 steps. Her O2 sats were in high 90s. We were horsing around--but her heart rate is going up way too much for minimal exertion for a 'healthy' 28 year old that isn't overweight.
I'm going to browbeat her to going to the doctor.
It's very strange--my sleep study shows I don't reach stage 4 sleep. Wonder if that could have something to do with waking up still exhausted?
FCV is low. O2 sats are in the 80's. They sent me home with an order for oxygen use at home.
He said he's sticking with the c-pap for now with added oxygen--pending results of AGBs and CT of chest. Will change it to bi-pap if the ABGs suggest I need it.
The walking for 6 minutes test was fun--not. I don't do exercise well. I wasn't surprised my sats dropped to mid 80's.
Saw the sleep study results--they still dropped even with the c-pap--hence, the oxygen addition he requested at night, I suppose. Also noted my heart is doing wonky stuff at night--lots of PAC's and PVC's. Might be time to re-evaluate my cardiac meds.
Got the results from the exam by the ALS neuro, too. I thought I had only UMN stuff going on--she said in her notes that I have both. Also said I had a spastic gait--I didn't realize that. Apparently I have abnormal reflexes everywhere--some absent and other areas where they are very brisk. Strange. Babinski was positive. The ONLY thing she put in her notes is MND -- I'm still hoping the MRI or other tests show some other reason for the junk going on. She did mention other possibilities to me--such as MS and something else I've forgotten now.
Still wondering--do I really want to know? We're treating my breathing issues, my scooter and walker are keeping me from falling--I'm back to not really being sure I want to know what's wrong. Just treat what comes up. MRI to rule out some nasty brain tumor or something makes sense...but not too sure I want to do a crap load of other tests at this point.
I only have to use the portable oxygen with any physical activity and at night--not 24/7.
He wants to see me in two months--or if my symptoms worsen.
Now we wait to see if the insurance will allow the oxygen--cuz I sure can't afford it otherwise. The company said they were delivering both tomorrow--but we'll see.
A major problem I'm noticing, besides the killer headaches--is a lot of confusion and forgetfulness. I feel like I'm losing a lot of my cognitive abilities. Will the O2 help that?
My body is going--i've accepted that--but I can't lose my brain power, too. I have trouble concentrating on a book. I read a post I want to reply to and can't remember the name of the person I'm replying to. I feel disconnected--and no, I don't think it's the meds I'm on--I've been on them for a very long time and am well adjusted to them. I have absolutely no patience. I'm short with everyone and don't even WANT to interact with people. The littlest things set me off. Not being able to use the toaster was the big issue today.
I drove myself to the appt. What a nightmare. I got lost--twice--with a freaking GPS. My leg kept jumping, I was terrified I was going to kill myself or someone else. I just have to give up driving--I'm not safe anymore. Whatever this is--it's affecting everything including my mind.
On a side note--my daughter was playing with my o2 sat monitor...my sats dropped--of course, I've known that. My pulse goes up to 140's with exercise--normal for me. But my daughters pulse? 160 from walking up 15 steps. Her O2 sats were in high 90s. We were horsing around--but her heart rate is going up way too much for minimal exertion for a 'healthy' 28 year old that isn't overweight.
I'm going to browbeat her to going to the doctor.
It's very strange--my sleep study shows I don't reach stage 4 sleep. Wonder if that could have something to do with waking up still exhausted?
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