Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 , I am so sorry you're having such a rough time with symptoms. I'd have someone drive you to the ER and tell them about your sarc and the symptoms you're having. Just letting it wait may make things worse. Pleeeease don't put off getting treatment. my prayers are with you hugs S. wrote: 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 Yahoo! Mail Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 , I am so sorry you're having such a rough time with symptoms. I'd have someone drive you to the ER and tell them about your sarc and the symptoms you're having. Just letting it wait may make things worse. Pleeeease don't put off getting treatment. my prayers are with you hugs S. wrote: 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 Yahoo! Mail Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 , I am so sorry you're having such a rough time with symptoms. I'd have someone drive you to the ER and tell them about your sarc and the symptoms you're having. Just letting it wait may make things worse. Pleeeease don't put off getting treatment. my prayers are with you hugs S. wrote: 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 Yahoo! Mail Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 > Tracie, Darlene, Rosie.. I'd like to hear your thoughts... if you have > any.. T Dear , I do not have a medical background, but I think it is siezures and you had better get to ER asap.........I am really worried about you and scared for you.......do not worry about what your family thinks....... YOU are what is important....I am so sorry you do not have better support. I know how hard it is to take care of yourself around people who do not understand...... Sending lots of love and prayers....... Darlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 > Tracie, Darlene, Rosie.. I'd like to hear your thoughts... if you have > any.. T Dear , I do not have a medical background, but I think it is siezures and you had better get to ER asap.........I am really worried about you and scared for you.......do not worry about what your family thinks....... YOU are what is important....I am so sorry you do not have better support. I know how hard it is to take care of yourself around people who do not understand...... Sending lots of love and prayers....... Darlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 Deae This sounds like ischemic attacks which can occur when the (granulomas) sarcoid is on your brain stem, it is really imprortant to get treatment as asap as once it is on you brian stem it can spread futher and cause irreparable damage. A short course of ivi methlyprednisolone is probably the the best short term treatment and I dont know how difficlult this is to get hold of for you but get it asap. Let us know how you get on. Kind Regards Clair wrote: 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 Yahoo! MailBring photos to life! New PhotoMail makes sharing a breeze. Yahoo! Photos – NEW, now offering a quality print service from just 8p a photo. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 T When they found me in the floor back in 97 I could talk & answer questions in my own dingy way but the hydro was squishing my brain terribly. I don't want you to put off something that might help you or at least stop something worse from happenening. OK I'll quit being a Mom for a while. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 T When they found me in the floor back in 97 I could talk & answer questions in my own dingy way but the hydro was squishing my brain terribly. I don't want you to put off something that might help you or at least stop something worse from happenening. OK I'll quit being a Mom for a while. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 T When they found me in the floor back in 97 I could talk & answer questions in my own dingy way but the hydro was squishing my brain terribly. I don't want you to put off something that might help you or at least stop something worse from happenening. OK I'll quit being a Mom for a while. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 . Have you started on any new meds recently or changed the dosages of the old ones? That happed to me once when I had a dystonic reaction to a med. I ended up going to the ER. They gave me shots of medication to calm me down. I stayed there until the drug was out of my system. Then I went completely off of it. Either that (I may sound stupid here, by my doctor has told me before its a bad case of anxiety!) Yup, that's what he told me. Now I don't think so and you probably don't think so. My advice is get to the ER and see whats going on just like said.........Debbie Solberg wrote: , I am so sorry you're having such a rough time with symptoms. I'd have someone drive you to the ER and tell them about your sarc and the symptoms you're having. Just letting it wait may make things worse. Pleeeease don't put off getting treatment. my prayers are with you hugs S. wrote: 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 Yahoo! Mail Bring photos to life! New PhotoMail makes sharing a breeze. Yahoo! Mail Use Photomail to share photos without annoying attachments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 . Have you started on any new meds recently or changed the dosages of the old ones? That happed to me once when I had a dystonic reaction to a med. I ended up going to the ER. They gave me shots of medication to calm me down. I stayed there until the drug was out of my system. Then I went completely off of it. Either that (I may sound stupid here, by my doctor has told me before its a bad case of anxiety!) Yup, that's what he told me. Now I don't think so and you probably don't think so. My advice is get to the ER and see whats going on just like said.........Debbie Solberg wrote: , I am so sorry you're having such a rough time with symptoms. I'd have someone drive you to the ER and tell them about your sarc and the symptoms you're having. Just letting it wait may make things worse. Pleeeease don't put off getting treatment. my prayers are with you hugs S. wrote: 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 Yahoo! Mail Bring photos to life! New PhotoMail makes sharing a breeze. Yahoo! Mail Use Photomail to share photos without annoying attachments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 , I know you must be really scared cause it is a scarey feeling to find yourself in a situation and not know exactly what happened to get you there............this happened to me last year in april I had gotten up in the middle of the night and the mental confusion was really bad i was living alone and I did some really weird off the wall stuff like wetting some papers in the sink, playing in the garbage can, pulled the top off my renuzit air freshners and strowed them about and when I got up in the morning I noticed all this stuff misplaced and I had this really weird headache it was on the weekend and I had some tremors in my hands and the side of my face felt like I had walked into cob webs and was getting numb so needless to say I went to the ER and the ER doc was knowledgable neuro sarc and said that the cognitive changes I experienced was typical of the progression of neuro sarc ya know of the disease itself and because I had such a killer headache he called my neuro and they decided to hospitalize me and ran test I was in for a week. Thats when my rheumy came by and seen me and said I was doing fine that my sarc was doing ok cause I wasn't having any pulmonary symptoms so to keep the same treatment but luckily the neuro treated and kept me a week. Sorry that was so long but that was the most scared i've ever been so far........so hun be careful and you may need to go and see the doctor. I will keep you in my thoughts and prayers. Hugs, Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 , I know you must be really scared cause it is a scarey feeling to find yourself in a situation and not know exactly what happened to get you there............this happened to me last year in april I had gotten up in the middle of the night and the mental confusion was really bad i was living alone and I did some really weird off the wall stuff like wetting some papers in the sink, playing in the garbage can, pulled the top off my renuzit air freshners and strowed them about and when I got up in the morning I noticed all this stuff misplaced and I had this really weird headache it was on the weekend and I had some tremors in my hands and the side of my face felt like I had walked into cob webs and was getting numb so needless to say I went to the ER and the ER doc was knowledgable neuro sarc and said that the cognitive changes I experienced was typical of the progression of neuro sarc ya know of the disease itself and because I had such a killer headache he called my neuro and they decided to hospitalize me and ran test I was in for a week. Thats when my rheumy came by and seen me and said I was doing fine that my sarc was doing ok cause I wasn't having any pulmonary symptoms so to keep the same treatment but luckily the neuro treated and kept me a week. Sorry that was so long but that was the most scared i've ever been so far........so hun be careful and you may need to go and see the doctor. I will keep you in my thoughts and prayers. Hugs, Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Thanks Jan, I ended up in the hospital for a week too. Not a fun place to be especially on the receiving end.. Hugz -- Re: Definatey Sick ,I know you must be really scared cause it is a scarey feeling to find yourself in a situation and not know exactly what happened to get you there............this happened to me last year in april I had gotten up in the middle of the night and the mental confusion was really bad i was living alone and I did some really weird off the wall stuff like wetting some papers in the sink, playing in the garbage can, pulled the top off my renuzit air freshners and strowed them about and when I got up in the morning I noticed all this stuff misplaced and I had this really weird headache it was on the weekend and I had some tremors in my hands and the side of my face felt like I had walked into cob webs and was getting numb so needless to say I went to the ER and the ER doc was knowledgable neuro sarc and said that the cognitive changes I experienced was typical of the progression of neuro sarc ya know of the disease itself and because I had such a killer headache he called my neuro and they decided to hospitalize me and ran test I was in for a week.Thats when my rheumy came by and seen me and said I was doing fine that my sarc was doing ok cause I wasn't having any pulmonary symptoms so to keep the same treatment but luckily the neuro treated and kept me a week.Sorry that was so long but that was the most scared i've ever been so far........so hun be careful and you may need to go and see the doctor.I will keep you in my thoughts and prayers.Hugs, Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Thanks Jan, I ended up in the hospital for a week too. Not a fun place to be especially on the receiving end.. Hugz -- Re: Definatey Sick ,I know you must be really scared cause it is a scarey feeling to find yourself in a situation and not know exactly what happened to get you there............this happened to me last year in april I had gotten up in the middle of the night and the mental confusion was really bad i was living alone and I did some really weird off the wall stuff like wetting some papers in the sink, playing in the garbage can, pulled the top off my renuzit air freshners and strowed them about and when I got up in the morning I noticed all this stuff misplaced and I had this really weird headache it was on the weekend and I had some tremors in my hands and the side of my face felt like I had walked into cob webs and was getting numb so needless to say I went to the ER and the ER doc was knowledgable neuro sarc and said that the cognitive changes I experienced was typical of the progression of neuro sarc ya know of the disease itself and because I had such a killer headache he called my neuro and they decided to hospitalize me and ran test I was in for a week.Thats when my rheumy came by and seen me and said I was doing fine that my sarc was doing ok cause I wasn't having any pulmonary symptoms so to keep the same treatment but luckily the neuro treated and kept me a week.Sorry that was so long but that was the most scared i've ever been so far........so hun be careful and you may need to go and see the doctor.I will keep you in my thoughts and prayers.Hugs, Jan Quote Link to comment Share on other sites More sharing options...
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