Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 Hi . I have not had any issues with losing concsciousness or anything like that, but I have had urinary incontience. I waw prescribed a pill for thatcallled oxybutynin 5 mg. I do think you should call your doctor right away aboout your other questions.I can't really help you there. It's Kinda over my head,.But your therapy with the low oxygen levels may be a good point. Well ,call him Monday and good luck Make your self be heard!!!! Hugs., DebbieRose wrote: , is this the first time you've had symptoms like this? Did you lose consciousness or have any vomiting/incontinence? And, most important, did you call one of your doctors? Several things are running through my mind--a drug reaction or interaction, hypoxia (low oxygen levels) causing confusion & tremors, some type of seizures, even infection (sometimes sepsis can actually produce a drop in temperature). Does any of this sound likely or possible? Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: "NS Group" <Neurosarcoidosis >Subject: Definatey SickDate: Sat, 25 Feb 2006 17:45:15 -0600 (Central Standard Time) Hi friends, Wanted to write to let you know, that something is definitely happening here. I started with these jerks bad yesterday in different parts of my body.. but last night I woke up in the floor..jerking really bad and I mean bad, yelling for my mom, which lives 3 doors away, and for my son... that was asleep in the next room, I don't remember how I got there if I had fallen or just sat down in the floor... When I woke up I was trying to find a piece of my C-pap machine...Jerking so much my arms and shoulders where hurting...Damian came in and asked me "Moma, what are doing in the floor, and took by the hand and got me up... he was teenager mad at me, or disgusted because I was in the floor.. it wasn't exactly the place I wanted to be either. if you guys know what I mean.... he put me back to bed got my C-Pap machine back together, and I went back to sleep, it was 7:30am but I had been there for ...HOURS.... working on that damn machine.. I had electrical wires every where......When I awoken again at 10:00am I woke up my eyes where like awake like scared. and the jerking and tremors are much much worse. I get up, dressed ok, and I asked Damian to take me to my mom's house. he does do that, my little little sister is there, they try to avoid eye contact with me, but I finally blurted out "I'm sick" which evidently they couldn't tell because they hadn't looked at me.. My little niece was there she is only 4 months old. and I wanted to hold her so bad.. finally said well ok, only if you sit way back in the chair.. So I did get to hold her a bit. after my mental confusion got some better.. My temp which is normally 99.6 or above, has suddenly taken a dive to 99.6 which I find odd if I'm finding a flare... I'm pretty scared at the moment, as I did find add Klonopin I took it and did calm down for about 5 hours later, and now I find myself heading for a worse night as the symptoms are getting worse already tonight. Tracie, Darlene, Rosie.. I'd like to hear your thoughts... if you have any.. T ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 , definitely don't put off seeing a doctor, I had an episode similiar to what you are describing in September late in the month and my family found me in the floor of the bathtub in a semi-conscious state and I wound up in the hospital for on off for two months for doctors trying to decide if my shunt was infected or blocked off, they finally decided to boost me up to basically what the doctor described to me as a deadly dose of methotrexate and solumedrol combination hoping to bring me back,to the point of death as they stated and back. Unfortunately with this treatment it took a long time for me to finally wake up and then two months to get back on my feet and I don't know how long to get my memory back, I didn't even remember my daughter getting married last year or that my dad had died in 98, I also thought my children were still little, I dreamed when unconcious some very scared dreams about dying and the such. I did have one good dream about heaven though. I can't remember if you said you have had problems with hydrocephalus or not with you sarcoid, but my specialist said this was all neurosarcoid the only thing it did cause was my shunt to eventually not work right so I did have to have it replaced after the first two surgeries, so I went through three surgeries just to get through this episode of neurosarcoid but I couldn't get this doctor here to listen to me, so please make sure you have a great doctor and make them listen but don't put it off. A friend in Texas, Jeanna Debbie wrote: Hi . I have not had any issues with losing concsciousness or anything like that, but I have had urinary incontience. I waw prescribed a pill for thatcallled oxybutynin 5 mg. I do think you should call your doctor right away aboout your other questions.I can't really help you there. It's Kinda over my head,.But your therapy with the low oxygen levels may be a good point. Well ,call him Monday and good luck Make your self be heard!!!! Hugs., DebbieRose wrote: , is this the first time you've had symptoms like this? Did you lose consciousness or have any vomiting/incontinence? And, most important, did you call one of your doctors? Several things are running through my mind--a drug reaction or interaction, hypoxia (low oxygen levels) causing confusion & tremors, some type of seizures, even infection (sometimes sepsis can actually produce a drop in temperature). Does any of this sound likely or possible? Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: "NS Group" <Neurosarcoidosis >Subject: Definatey SickDate: Sat, 25 Feb 2006 17:45:15 -0600 (Central Standard Time) Hi friends, Wanted to write to let you know, that something is definitely happening here. I started with these jerks bad yesterday in different parts of my body.. but last night I woke up in the floor..jerking really bad and I mean bad, yelling for my mom, which lives 3 doors away, and for my son... that was asleep in the next room, I don't remember how I got there if I had fallen or just sat down in the floor... When I woke up I was trying to find a piece of my C-pap machine...Jerking so much my arms and shoulders where hurting...Damian came in and asked me "Moma, what are doing in the floor, and took by the hand and got me up... he was teenager mad at me, or disgusted because I was in the floor.. it wasn't exactly the place I wanted to be either. if you guys know what I mean.... he put me back to bed got my C-Pap machine back together, and I went back to sleep, it was 7:30am but I had been there for ...HOURS.... working on that damn machine.. I had electrical wires every where......When I awoken again at 10:00am I woke up my eyes where like awake like scared. and the jerking and tremors are much much worse. I get up, dressed ok, and I asked Damian to take me to my mom's house. he does do that, my little little sister is there, they try to avoid eye contact with me, but I finally blurted out "I'm sick" which evidently they couldn't tell because they hadn't looked at me.. My little niece was there she is only 4 months old. and I wanted to hold her so bad.. finally said well ok, only if you sit way back in the chair.. So I did get to hold her a bit. after my mental confusion got some better.. My temp which is normally 99.6 or above, has suddenly taken a dive to 99.6 which I find odd if I'm finding a flare... I'm pretty scared at the moment, as I did find add Klonopin I took it and did calm down for about 5 hours later, and now I find myself heading for a worse night as the symptoms are getting worse already tonight. Tracie, Darlene, Rosie.. I'd like to hear your thoughts... if you have any.. T ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 , definitely don't put off seeing a doctor, I had an episode similiar to what you are describing in September late in the month and my family found me in the floor of the bathtub in a semi-conscious state and I wound up in the hospital for on off for two months for doctors trying to decide if my shunt was infected or blocked off, they finally decided to boost me up to basically what the doctor described to me as a deadly dose of methotrexate and solumedrol combination hoping to bring me back,to the point of death as they stated and back. Unfortunately with this treatment it took a long time for me to finally wake up and then two months to get back on my feet and I don't know how long to get my memory back, I didn't even remember my daughter getting married last year or that my dad had died in 98, I also thought my children were still little, I dreamed when unconcious some very scared dreams about dying and the such. I did have one good dream about heaven though. I can't remember if you said you have had problems with hydrocephalus or not with you sarcoid, but my specialist said this was all neurosarcoid the only thing it did cause was my shunt to eventually not work right so I did have to have it replaced after the first two surgeries, so I went through three surgeries just to get through this episode of neurosarcoid but I couldn't get this doctor here to listen to me, so please make sure you have a great doctor and make them listen but don't put it off. A friend in Texas, Jeanna Debbie wrote: Hi . I have not had any issues with losing concsciousness or anything like that, but I have had urinary incontience. I waw prescribed a pill for thatcallled oxybutynin 5 mg. I do think you should call your doctor right away aboout your other questions.I can't really help you there. It's Kinda over my head,.But your therapy with the low oxygen levels may be a good point. Well ,call him Monday and good luck Make your self be heard!!!! Hugs., DebbieRose wrote: , is this the first time you've had symptoms like this? Did you lose consciousness or have any vomiting/incontinence? And, most important, did you call one of your doctors? Several things are running through my mind--a drug reaction or interaction, hypoxia (low oxygen levels) causing confusion & tremors, some type of seizures, even infection (sometimes sepsis can actually produce a drop in temperature). Does any of this sound likely or possible? Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: "NS Group" <Neurosarcoidosis >Subject: Definatey SickDate: Sat, 25 Feb 2006 17:45:15 -0600 (Central Standard Time) Hi friends, Wanted to write to let you know, that something is definitely happening here. I started with these jerks bad yesterday in different parts of my body.. but last night I woke up in the floor..jerking really bad and I mean bad, yelling for my mom, which lives 3 doors away, and for my son... that was asleep in the next room, I don't remember how I got there if I had fallen or just sat down in the floor... When I woke up I was trying to find a piece of my C-pap machine...Jerking so much my arms and shoulders where hurting...Damian came in and asked me "Moma, what are doing in the floor, and took by the hand and got me up... he was teenager mad at me, or disgusted because I was in the floor.. it wasn't exactly the place I wanted to be either. if you guys know what I mean.... he put me back to bed got my C-Pap machine back together, and I went back to sleep, it was 7:30am but I had been there for ...HOURS.... working on that damn machine.. I had electrical wires every where......When I awoken again at 10:00am I woke up my eyes where like awake like scared. and the jerking and tremors are much much worse. I get up, dressed ok, and I asked Damian to take me to my mom's house. he does do that, my little little sister is there, they try to avoid eye contact with me, but I finally blurted out "I'm sick" which evidently they couldn't tell because they hadn't looked at me.. My little niece was there she is only 4 months old. and I wanted to hold her so bad.. finally said well ok, only if you sit way back in the chair.. So I did get to hold her a bit. after my mental confusion got some better.. My temp which is normally 99.6 or above, has suddenly taken a dive to 99.6 which I find odd if I'm finding a flare... I'm pretty scared at the moment, as I did find add Klonopin I took it and did calm down for about 5 hours later, and now I find myself heading for a worse night as the symptoms are getting worse already tonight. Tracie, Darlene, Rosie.. I'd like to hear your thoughts... if you have any.. T ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 , definitely don't put off seeing a doctor, I had an episode similiar to what you are describing in September late in the month and my family found me in the floor of the bathtub in a semi-conscious state and I wound up in the hospital for on off for two months for doctors trying to decide if my shunt was infected or blocked off, they finally decided to boost me up to basically what the doctor described to me as a deadly dose of methotrexate and solumedrol combination hoping to bring me back,to the point of death as they stated and back. Unfortunately with this treatment it took a long time for me to finally wake up and then two months to get back on my feet and I don't know how long to get my memory back, I didn't even remember my daughter getting married last year or that my dad had died in 98, I also thought my children were still little, I dreamed when unconcious some very scared dreams about dying and the such. I did have one good dream about heaven though. I can't remember if you said you have had problems with hydrocephalus or not with you sarcoid, but my specialist said this was all neurosarcoid the only thing it did cause was my shunt to eventually not work right so I did have to have it replaced after the first two surgeries, so I went through three surgeries just to get through this episode of neurosarcoid but I couldn't get this doctor here to listen to me, so please make sure you have a great doctor and make them listen but don't put it off. A friend in Texas, Jeanna Debbie wrote: Hi . I have not had any issues with losing concsciousness or anything like that, but I have had urinary incontience. I waw prescribed a pill for thatcallled oxybutynin 5 mg. I do think you should call your doctor right away aboout your other questions.I can't really help you there. It's Kinda over my head,.But your therapy with the low oxygen levels may be a good point. Well ,call him Monday and good luck Make your self be heard!!!! Hugs., DebbieRose wrote: , is this the first time you've had symptoms like this? Did you lose consciousness or have any vomiting/incontinence? And, most important, did you call one of your doctors? Several things are running through my mind--a drug reaction or interaction, hypoxia (low oxygen levels) causing confusion & tremors, some type of seizures, even infection (sometimes sepsis can actually produce a drop in temperature). Does any of this sound likely or possible? Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: "NS Group" <Neurosarcoidosis >Subject: Definatey SickDate: Sat, 25 Feb 2006 17:45:15 -0600 (Central Standard Time) Hi friends, Wanted to write to let you know, that something is definitely happening here. I started with these jerks bad yesterday in different parts of my body.. but last night I woke up in the floor..jerking really bad and I mean bad, yelling for my mom, which lives 3 doors away, and for my son... that was asleep in the next room, I don't remember how I got there if I had fallen or just sat down in the floor... When I woke up I was trying to find a piece of my C-pap machine...Jerking so much my arms and shoulders where hurting...Damian came in and asked me "Moma, what are doing in the floor, and took by the hand and got me up... he was teenager mad at me, or disgusted because I was in the floor.. it wasn't exactly the place I wanted to be either. if you guys know what I mean.... he put me back to bed got my C-Pap machine back together, and I went back to sleep, it was 7:30am but I had been there for ...HOURS.... working on that damn machine.. I had electrical wires every where......When I awoken again at 10:00am I woke up my eyes where like awake like scared. and the jerking and tremors are much much worse. I get up, dressed ok, and I asked Damian to take me to my mom's house. he does do that, my little little sister is there, they try to avoid eye contact with me, but I finally blurted out "I'm sick" which evidently they couldn't tell because they hadn't looked at me.. My little niece was there she is only 4 months old. and I wanted to hold her so bad.. finally said well ok, only if you sit way back in the chair.. So I did get to hold her a bit. after my mental confusion got some better.. My temp which is normally 99.6 or above, has suddenly taken a dive to 99.6 which I find odd if I'm finding a flare... I'm pretty scared at the moment, as I did find add Klonopin I took it and did calm down for about 5 hours later, and now I find myself heading for a worse night as the symptoms are getting worse already tonight. Tracie, Darlene, Rosie.. I'd like to hear your thoughts... if you have any.. T ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
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