Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Tony Be careful driving kiddo. Can you carpool to work? I went to half pay on disability. It sucks but you just eat more peanut butter. LOL I gave up driving years ago & it sucks not driving too but we have decent public transportation here. I always plan my moves around the bus line. Take care. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Tony Be careful driving kiddo. Can you carpool to work? I went to half pay on disability. It sucks but you just eat more peanut butter. LOL I gave up driving years ago & it sucks not driving too but we have decent public transportation here. I always plan my moves around the bus line. Take care. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Tony Be careful driving kiddo. Can you carpool to work? I went to half pay on disability. It sucks but you just eat more peanut butter. LOL I gave up driving years ago & it sucks not driving too but we have decent public transportation here. I always plan my moves around the bus line. Take care. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Yikes, Tony! Have you called your doctor about all this? Are you being seen at a VA hospital or a private doctor? You need to be evaluated by an ENT doc. This pain may be a forerunner of facial nerve palsy. If you develop drooping facial muscles, get seen right away & insist on a short course of Prednisone (called a dos-pak; gradually decreasing dosages over 7-10 days) and Acyclivir (anti-viral against herpes virus). Herpes is involved in many facial nerve palsies; remember, cold sores/fever blisters are caused by herpes type I. I've had two facial nerve palsies (AKA Bell's palsy). The first one presented with a numb tongue for 2-3 days before the palsy. It resolved completely after the Pred & Acyclivir, which I had to badger my doc into ordering. The second time presented with severe pain behind my ear, radiating up the side of my head & down into my neck, followed by the palsy. I just took Pred that time & it never did resolve completely, even after speech therapy & electrostimulation of the muscles. Most people don't notice it, but I can tell. The doctor will tell you that 80% of these resolve on their own, but you don't want to be one of the 20% that don't. The fatigue definitely sounds like systemic sarc. I slept everywhere. I wonder how fast you came down off the Prednisone. Are your kidneys working ok? You know that you can't be driving until you get evaluated. YOU KNOW. One of these days somebody is going to be in your way when you run a red light. Could you live with yourself if you caused the death or severe injury of someone, maybe even a child? Get someone else to drive. I know it's a pain. Last year I kind of spaced out, ran off the road into a ditch, hit a steel railroad sign, veered back onto the shoulder, than back into the ditch & hit a telephone pole. I didn't recall anything until I saw the pole just ahead. I had just dropped my granddaughter at school & was wide awake, planning to buy some cinnamon rolls at Hardee's. If there had been kids walking along the side of the road, I would have mowed them down. I got chills when I went back to the site later & took pictures. My neurologist didn't let me drive for 2 months. After sleep studies, EEG, etc. were okay, he decided it was probably the neurontin I was taking for my neuropathic pain. I had to taper off it, wait several weeks, then promise not to drive if I was sleepy or had taken anything that might sedate me, like pain pills. I hated having to ask for rides, but I kept remembering that crash, picturing kids walking to school. I have restricted my driving quite a bit, just to be on the safe side. This is another one of the crappy things we have to deal with. Even a temporary loss of independence is hard, but easier than knowing we killed someone. So please, Tony, get checked out, for your safety & others you might encounter. I'll climb off my soapbox now. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: "neurosarcoidosis " <neurosarcoidosis >Subject: all down hillDate: Tue, 21 Feb 2006 17:42:29 -0800 (PST) hello all, well it seems now that im off seroids im going down hill again, all this week i get so tired about lunch time, while i was on the steroids i could go all day without a prob, i dont know if its just me or not, when i get up in the morning i feel like i dident sleep at all, i got home yesterday and fell asleep on the floor just inside the door, lol, till the wife wokeme up to goto bed. my ear is bugging the crap out of me, not only does it ring all the time now when i eat anything it hurts like the dickens, it hurts from the glands in my throat to my ear. my memory seems to be getting bad, i keep running red lights, it dont bother me but the people riding with me dont like it much lol. oh well i gues i have to get used to these types of things, the va has finaly decided to pay me 50% disability but thats not enough to live on so i guess i will have to work for a while longer, thank god. but i know there will come a day when i wont beable to, i just hope it wont be soon, hope this finds you all well, bye for now. tony in va. Brings words and photos together (easily) withPhotoMail - it's free and works with Yahoo! Mail. ~~~~ *** ~~~ *** ~~~ *** ~~~~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 21, 2006 Report Share Posted February 21, 2006 Yikes, Tony! Have you called your doctor about all this? Are you being seen at a VA hospital or a private doctor? You need to be evaluated by an ENT doc. This pain may be a forerunner of facial nerve palsy. If you develop drooping facial muscles, get seen right away & insist on a short course of Prednisone (called a dos-pak; gradually decreasing dosages over 7-10 days) and Acyclivir (anti-viral against herpes virus). Herpes is involved in many facial nerve palsies; remember, cold sores/fever blisters are caused by herpes type I. I've had two facial nerve palsies (AKA Bell's palsy). The first one presented with a numb tongue for 2-3 days before the palsy. It resolved completely after the Pred & Acyclivir, which I had to badger my doc into ordering. The second time presented with severe pain behind my ear, radiating up the side of my head & down into my neck, followed by the palsy. I just took Pred that time & it never did resolve completely, even after speech therapy & electrostimulation of the muscles. Most people don't notice it, but I can tell. The doctor will tell you that 80% of these resolve on their own, but you don't want to be one of the 20% that don't. The fatigue definitely sounds like systemic sarc. I slept everywhere. I wonder how fast you came down off the Prednisone. Are your kidneys working ok? You know that you can't be driving until you get evaluated. YOU KNOW. One of these days somebody is going to be in your way when you run a red light. Could you live with yourself if you caused the death or severe injury of someone, maybe even a child? Get someone else to drive. I know it's a pain. Last year I kind of spaced out, ran off the road into a ditch, hit a steel railroad sign, veered back onto the shoulder, than back into the ditch & hit a telephone pole. I didn't recall anything until I saw the pole just ahead. I had just dropped my granddaughter at school & was wide awake, planning to buy some cinnamon rolls at Hardee's. If there had been kids walking along the side of the road, I would have mowed them down. I got chills when I went back to the site later & took pictures. My neurologist didn't let me drive for 2 months. After sleep studies, EEG, etc. were okay, he decided it was probably the neurontin I was taking for my neuropathic pain. I had to taper off it, wait several weeks, then promise not to drive if I was sleepy or had taken anything that might sedate me, like pain pills. I hated having to ask for rides, but I kept remembering that crash, picturing kids walking to school. I have restricted my driving quite a bit, just to be on the safe side. This is another one of the crappy things we have to deal with. Even a temporary loss of independence is hard, but easier than knowing we killed someone. So please, Tony, get checked out, for your safety & others you might encounter. I'll climb off my soapbox now. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: "neurosarcoidosis " <neurosarcoidosis >Subject: all down hillDate: Tue, 21 Feb 2006 17:42:29 -0800 (PST) hello all, well it seems now that im off seroids im going down hill again, all this week i get so tired about lunch time, while i was on the steroids i could go all day without a prob, i dont know if its just me or not, when i get up in the morning i feel like i dident sleep at all, i got home yesterday and fell asleep on the floor just inside the door, lol, till the wife wokeme up to goto bed. my ear is bugging the crap out of me, not only does it ring all the time now when i eat anything it hurts like the dickens, it hurts from the glands in my throat to my ear. my memory seems to be getting bad, i keep running red lights, it dont bother me but the people riding with me dont like it much lol. oh well i gues i have to get used to these types of things, the va has finaly decided to pay me 50% disability but thats not enough to live on so i guess i will have to work for a while longer, thank god. but i know there will come a day when i wont beable to, i just hope it wont be soon, hope this finds you all well, bye for now. tony in va. Brings words and photos together (easily) withPhotoMail - it's free and works with Yahoo! Mail. ~~~~ *** ~~~ *** ~~~ *** ~~~~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 21, 2006 Report Share Posted February 21, 2006 Yikes, Tony! Have you called your doctor about all this? Are you being seen at a VA hospital or a private doctor? You need to be evaluated by an ENT doc. This pain may be a forerunner of facial nerve palsy. If you develop drooping facial muscles, get seen right away & insist on a short course of Prednisone (called a dos-pak; gradually decreasing dosages over 7-10 days) and Acyclivir (anti-viral against herpes virus). Herpes is involved in many facial nerve palsies; remember, cold sores/fever blisters are caused by herpes type I. I've had two facial nerve palsies (AKA Bell's palsy). The first one presented with a numb tongue for 2-3 days before the palsy. It resolved completely after the Pred & Acyclivir, which I had to badger my doc into ordering. The second time presented with severe pain behind my ear, radiating up the side of my head & down into my neck, followed by the palsy. I just took Pred that time & it never did resolve completely, even after speech therapy & electrostimulation of the muscles. Most people don't notice it, but I can tell. The doctor will tell you that 80% of these resolve on their own, but you don't want to be one of the 20% that don't. The fatigue definitely sounds like systemic sarc. I slept everywhere. I wonder how fast you came down off the Prednisone. Are your kidneys working ok? You know that you can't be driving until you get evaluated. YOU KNOW. One of these days somebody is going to be in your way when you run a red light. Could you live with yourself if you caused the death or severe injury of someone, maybe even a child? Get someone else to drive. I know it's a pain. Last year I kind of spaced out, ran off the road into a ditch, hit a steel railroad sign, veered back onto the shoulder, than back into the ditch & hit a telephone pole. I didn't recall anything until I saw the pole just ahead. I had just dropped my granddaughter at school & was wide awake, planning to buy some cinnamon rolls at Hardee's. If there had been kids walking along the side of the road, I would have mowed them down. I got chills when I went back to the site later & took pictures. My neurologist didn't let me drive for 2 months. After sleep studies, EEG, etc. were okay, he decided it was probably the neurontin I was taking for my neuropathic pain. I had to taper off it, wait several weeks, then promise not to drive if I was sleepy or had taken anything that might sedate me, like pain pills. I hated having to ask for rides, but I kept remembering that crash, picturing kids walking to school. I have restricted my driving quite a bit, just to be on the safe side. This is another one of the crappy things we have to deal with. Even a temporary loss of independence is hard, but easier than knowing we killed someone. So please, Tony, get checked out, for your safety & others you might encounter. I'll climb off my soapbox now. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: "neurosarcoidosis " <neurosarcoidosis >Subject: all down hillDate: Tue, 21 Feb 2006 17:42:29 -0800 (PST) hello all, well it seems now that im off seroids im going down hill again, all this week i get so tired about lunch time, while i was on the steroids i could go all day without a prob, i dont know if its just me or not, when i get up in the morning i feel like i dident sleep at all, i got home yesterday and fell asleep on the floor just inside the door, lol, till the wife wokeme up to goto bed. my ear is bugging the crap out of me, not only does it ring all the time now when i eat anything it hurts like the dickens, it hurts from the glands in my throat to my ear. my memory seems to be getting bad, i keep running red lights, it dont bother me but the people riding with me dont like it much lol. oh well i gues i have to get used to these types of things, the va has finaly decided to pay me 50% disability but thats not enough to live on so i guess i will have to work for a while longer, thank god. but i know there will come a day when i wont beable to, i just hope it wont be soon, hope this finds you all well, bye for now. tony in va. Brings words and photos together (easily) withPhotoMail - it's free and works with Yahoo! Mail. ~~~~ *** ~~~ *** ~~~ *** ~~~~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 21, 2006 Report Share Posted February 21, 2006 Hi Tony, I have a driving story similar to Rose's . Actually two! First one, I was driving down this rural curvy road all by myself and just spaced it. Like her , the next thing I can remember is the telephone pole right in front of me. I split it in half with my car. Thankfully nobody was coming the other way , and I didn't get hurt either. The other time I was in bumper to bumper traffic and didn't notice the car in front of me had stopped until it was too late. I hit this snobby bitch with a Mercedes! Boy did she scream at me which only got me more upset. The cops had to have somebody come pick me up. After that, they changed my meds around and I am not aloud to drive long distances. WHich is fine my be, cause I get tired too fast and I have a phobia now! Not lecturing , just a friendly precaution, be careful about the driving, okay? DebbieRose wrote: Yikes, Tony! Have you called your doctor about all this? Are you being seen at a VA hospital or a private doctor? You need to be evaluated by an ENT doc. This pain may be a forerunner of facial nerve palsy. If you develop drooping facial muscles, get seen right away & insist on a short course of Prednisone (called a dos-pak; gradually decreasing dosages over 7-10 days) and Acyclivir (anti-viral against herpes virus). Herpes is involved in many facial nerve palsies; remember, cold sores/fever blisters are caused by herpes type I. I've had two facial nerve palsies (AKA Bell's palsy). The first one presented with a numb tongue for 2-3 days before the palsy. It resolved completely after the Pred & Acyclivir, which I had to badger my doc into ordering. The second time presented with severe pain behind my ear, radiating up the side of my head & down into my neck, followed by the palsy. I just took Pred that time & it never did resolve completely, even after speech therapy & electrostimulation of the muscles. Most people don't notice it, but I can tell. The doctor will tell you that 80% of these resolve on their own, but you don't want to be one of the 20% that don't. The fatigue definitely sounds like systemic sarc. I slept everywhere. I wonder how fast you came down off the Prednisone. Are your kidneys working ok? You know that you can't be driving until you get evaluated. YOU KNOW. One of these days somebody is going to be in your way when you run a red light. Could you live with yourself if you caused the death or severe injury of someone, maybe even a child? Get someone else to drive. I know it's a pain. Last year I kind of spaced out, ran off the road into a ditch, hit a steel railroad sign, veered back onto the shoulder, than back into the ditch & hit a telephone pole. I didn't recall anything until I saw the pole just ahead. I had just dropped my granddaughter at school & was wide awake, planning to buy some cinnamon rolls at Hardee's. If there had been kids walking along the side of the road, I would have mowed them down. I got chills when I went back to the site later & took pictures. My neurologist didn't let me drive for 2 months. After sleep studies, EEG, etc. were okay, he decided it was probably the neurontin I was taking for my neuropathic pain. I had to taper off it, wait several weeks, then promise not to drive if I was sleepy or had taken anything that might sedate me, like pain pills. I hated having to ask for rides, but I kept remembering that crash, picturing kids walking to school. I have restricted my driving quite a bit, just to be on the safe side. This is another one of the crappy things we have to deal with. Even a temporary loss of independence is hard, but easier than knowing we killed someone. So please, Tony, get checked out, for your safety & others you might encounter. I'll climb off my soapbox now. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: "neurosarcoidosis " <neurosarcoidosis >Subject: all down hillDate: Tue, 21 Feb 2006 17:42:29 -0800 (PST) hello all, well it seems now that im off seroids im going down hill again, all this week i get so tired about lunch time, while i was on the steroids i could go all day without a prob, i dont know if its just me or not, when i get up in the morning i feel like i dident sleep at all, i got home yesterday and fell asleep on the floor just inside the door, lol, till the wife wokeme up to goto bed. my ear is bugging the crap out of me, not only does it ring all the time now when i eat anything it hurts like the dickens, it hurts from the glands in my throat to my ear. my memory seems to be getting bad, i keep running red lights, it dont bother me but the people riding with me dont like it much lol. oh well i gues i have to get used to these types of things, the va has finaly decided to pay me 50% disability but thats not enough to live on so i guess i will have to work for a while longer, thank god. but i know there will come a day when i wont beable to, i just hope it wont be soon, hope this finds you all well, bye for now. tony in va. Brings words and photos together (easily) withPhotoMail - it's free and works with Yahoo! Mail. ~~~~ *** ~~~ *** ~~~ *** ~~~~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 22, 2006 Report Share Posted February 22, 2006 Tony, You need to be on a drug to suppress the immune system when you come off the steroids! Imuran, Remicade, .....there are several out there....when I was diagnosed with Sarcoidosis, my Doctor put me on a small dose of Prednisone and said that it would probably stop the Sarc and it would never come back..... he put me back on the prednisone about 6 weeks later and this on and off continued for several years.....I was ignorant to the facts about Sarc back then and by the time I got to a Rheumi, the Sarc had already damaged my lungs and was systemic......and my Rheumi was really upset that I was not on a drug to supress the Sarc Monster.......at the first visit, he put me on Imuran and it has helped stave off the old Monster for a little while. I hope I NEVER have to go back on Prednisone.....anyway, my point is this: FIND a Doctor that will put you on one of the drugs to suppress the immune system......there are many.....and most of us are on one....they will NOT cure the Sarc Monster but most of the time, they knock him down a bit......:-) Keep in touch and update us. Hugs, Darlene NS Co-Owner/Moderator > hello all, well it seems now that im off seroids im going down hill > again, > hope this finds you all well, bye for now. > tony in > va. Quote Link to comment Share on other sites More sharing options...
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