Guest guest Posted April 16, 2004 Report Share Posted April 16, 2004 Debbie, one other thing, my mind seems to be functioning elsewhere this morning but do you live in Texas? I went to MD but you generally need a referral to get in quicker I think, at least that is Dr. O'Grady did for me. However, the one that I went to is in Florida now, but I know there is supposed to be a Sarc specialist in Temple I just don't know anything about him. Let me know what you find out from Dr. O'Grady and I will let you know what happens here because the neurologist I have been seeing I am pretty sure is not going to treat me but send me somewhere else in Dallas probably. Your friend in Texas, Jeanna > >Reply-To: Neurosarcoidosis >To: Neurosarcoidosis >Subject: Re: Re: New to group >Date: Thu, 15 Apr 2004 12:53:18 -0700 (PDT) > >Okay Jeanna, thanks a lot. I haven't heard from him yet, but you know drs. I hope you find some answers for yourself soon. You are worse off than me and you deserve it right now. Luv, Debbie > >nna Flowers wrote: >Hi Debbie, let me know what Dr. O'Grady has to say and if you need anything else I will try to help if I can at least helping others takes my mind off myself and the way things are going right now with whether the doctors are going to mess around and let me lose more vision than I can stand to lose or hearing. I have dealt with pain for so long that I know how that feels it is just I hate not feeling safe enough to get out and go anywhere by myself. I will shut up now and like I said let me know because if you need me to call down there if he doesn't call back and let him know that I referred you to him let me know and I will do it. Your friend in Texas, Jeanna > > > > > > > >Reply-To: Neurosarcoidosis > >To: Neurosarcoidosis > >Subject: Re: Re: New to group > >Date: Wed, 14 Apr 2004 07:48:21 -0700 (PDT) > > > >Hey Jeff, I just called Brain O'Grady's office and talked to the secretary. She said she will leave a msg for him and call me back. Thanks. We'll see what happens. Debbie > > > >Jeanna Flowers wrote: > >Debbie, talk to Jeanna because she had to have a "special" doctor at just the right place at the right time to diagnose what doctors from UTHSC and Method.-Houston (Dr. Stanley Appel-world acclaimed) could not determine. Check and see if you can locate O'Grady in Austin, Texas and see of he has someone to refer you to in your area. > > > >Jeanna's lessor half > > > > > > > > > > > > > >Reply-To: Neurosarcoidosis > > >To: Neurosarcoidosis > > >Subject: Re: Re: New to group > > >Date: Sat, 10 Apr 2004 05:25:10 -0700 (PDT) > > > > > >Wow, E, > > > You just described a lot of what's going on inside of me and "my head" too. I don't have any involvement of the lungs either. Did you have a confirmed diagnosis of Neurosarc? My neurologist gives me all those "remarks" that you say your friends give you. And that's coming from a dr. I know what my abilities were a little over a year ago, before they found the sarc and what my abilities are now with the memory, speech, forgetting what Im gonna say,etc. And I know this year has changed me so much. > > >But they still won't confirm neurosarc cause nothing has been seen on the xrays. > > >So don't feel you are alone , madmystk, Im right here, frustrated, right along side you! > > > Luv, Debbie T. > > > > > >madmystyk wrote: > > >Hi Cheryl, > > >Welcome to the group! I think you'll find a nice bunch of people ready > > >to share and hopefully help with problems from A-Z. > > >I don't have any real problems with my lungs so far, but man do I know > > >what it's like not to be able to find words that where once easy to > > >say. It is very frustrating! I'm waiting for the day that I can't > > >remember my name. I'm now at the point where at times I can't find my > > >way home from one of my many Doctor appointments. > > >People look at me like I'm drunk or high on drugs when I'm talking to > > >them. > > >More and more I keep to myself, it's too hard to constantly try to > > >explain to someone what's happening. Everybody thinks that they help > > >by saying " that happens to me all the time " , "I'm always forgetting > > >things too ", " We're just getting older ", etc..... > > >The only thing that does to me is make me crazier than I already am. > > >They have no idea what it's really like. If I didn't know that they > > >were trying to be nice I'd hit them in the head with something! > > >Being irritable, anxious and forgetting things is just a part of my > > >life now. > > >Some of the meds might make it worse, but I can feel my brain being > > >changed by the disease. The constant Pain makes everything worse. How > > >can you think of anything else when the pain is always ripping you > > >apart! The stress of the disease brought out the Bi-Polar disorder > > >that the Docs say has always been there. If I didn't take those meds I > > >would really go off the deep end. No matter how broke I am, I make > > >sure I get my "LOON" Pills. I don't want to lose the few friends I > > >have left. Talk about tempers! When I'm manic I can scare a house full > > >of Terrorists! and when I'm deppressed I can't get up out of bed to > > >take a shower! > > >I know it's hard on them to put up with me. I can't do much anymore > > >and I can't carry on a stimulating conversation! I'm not feeling sorry > > >for myself or trying to scare you. I'm just trying to give a little > > >insight on what goes on inside me and I think quite a few others with > > >this disease. I still understand what people say to me, but trying to > > >respond is very difficult at times. Sometimes I'm OK, but others it's > > >like my brain got stuck! > > >I'll stop rambling now, I do that a lot now too. I hope I helped a > > >little. Please feel free to ask anything you want and I'll do my best > > >to try and help. > > >BTW: What is TIA? > > >frankE, the "MadMystyk" > > >pacoepi@... > > > > > > > > > > > > > Hello everyone, > > > > My name is Cheryl and I live in Texas. I work at home which is > > >nice > > > > sometimes but gets very lonely because my husband works on the > > > > road. Anyway the reason for this post is my husband has sarcoid in > > > > the lungs. He was diagnosed about 24 years ago and has never taken > > > > anything except flovent. Wouldn't take the steroids because of the > > > > side effects. > > > > > > > > I've noticed over the last year that we've been together that he's > > > > gotten more irritable, anxious, forgets what he was going to say, > > > > etc and he's just steady gotten worse. > > > > > > > > About a month ago we were in Florida and he had two TIA's within 30 > > > > hours of each other. The emergency room there never even > > >considered > > > > the sarc. Released him and told him to take aspirin. He just > > > > happen to come home for a few days and he was very tired, no > > >energy, > > > > just didn't feel well. Well, the night before he was to leave he > > > > had another TIA. A very bad one. He couldn't get the words out > > > > etc. Back to the emergency room. This time I took him to the VA > > >in > > > > the Medical Center in Houston. Within about 2 hours after doing a > > > > spinal tap they diagnosed him with neurosarcoidosis in the > > > > meninges. The neuro doctor was the best. Started him on the > > > > steroids which the doctor told him if he didn't, it would just get > > > > worse and the next TIA could be a full blown stroke. > > > > > > > > So they let him out yesterday. He seems to be responding to the > > > > medications. He doesn't wheeze anymore. His head is a little more > > > > clearer. But....and there is always one he is even more impatient > > > > than he was, very moody. Is this a side effect of the drugs or is > > > > it the cause of the sarc? I'm very concerned. He tends of over > > > > react to things and if this gets worse, I'm not sure what he will > > > > do. I know some of the side effects are psychotic episodes. Any > > > > advice would be helpful. > > > > > > > > Thanks, > > > > Cheryl > > > > > > > > > > > > > > > > > >~~~~ *** ~~~ *** ~~~ *** ~~~~ > > >The Neurosarcoidosis Community > > > > > >Live Group Chat:- > > >Mondays & Fridays 10pm EST USA > > >http://www.elderwyn.com/neurosarcoidosis/chat.php > > > > > >Message Archives:- > > >http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > > >Members 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 April 16, 2004 Report Share Posted April 16, 2004 Debbie, one other thing, my mind seems to be functioning elsewhere this morning but do you live in Texas? I went to MD but you generally need a referral to get in quicker I think, at least that is Dr. O'Grady did for me. However, the one that I went to is in Florida now, but I know there is supposed to be a Sarc specialist in Temple I just don't know anything about him. Let me know what you find out from Dr. O'Grady and I will let you know what happens here because the neurologist I have been seeing I am pretty sure is not going to treat me but send me somewhere else in Dallas probably. Your friend in Texas, Jeanna > >Reply-To: Neurosarcoidosis >To: Neurosarcoidosis >Subject: Re: Re: New to group >Date: Thu, 15 Apr 2004 12:53:18 -0700 (PDT) > >Okay Jeanna, thanks a lot. I haven't heard from him yet, but you know drs. I hope you find some answers for yourself soon. You are worse off than me and you deserve it right now. Luv, Debbie > >nna Flowers wrote: >Hi Debbie, let me know what Dr. O'Grady has to say and if you need anything else I will try to help if I can at least helping others takes my mind off myself and the way things are going right now with whether the doctors are going to mess around and let me lose more vision than I can stand to lose or hearing. I have dealt with pain for so long that I know how that feels it is just I hate not feeling safe enough to get out and go anywhere by myself. I will shut up now and like I said let me know because if you need me to call down there if he doesn't call back and let him know that I referred you to him let me know and I will do it. Your friend in Texas, Jeanna > > > > > > > >Reply-To: Neurosarcoidosis > >To: Neurosarcoidosis > >Subject: Re: Re: New to group > >Date: Wed, 14 Apr 2004 07:48:21 -0700 (PDT) > > > >Hey Jeff, I just called Brain O'Grady's office and talked to the secretary. She said she will leave a msg for him and call me back. Thanks. We'll see what happens. Debbie > > > >Jeanna Flowers wrote: > >Debbie, talk to Jeanna because she had to have a "special" doctor at just the right place at the right time to diagnose what doctors from UTHSC and Method.-Houston (Dr. Stanley Appel-world acclaimed) could not determine. Check and see if you can locate O'Grady in Austin, Texas and see of he has someone to refer you to in your area. > > > >Jeanna's lessor half > > > > > > > > > > > > > >Reply-To: Neurosarcoidosis > > >To: Neurosarcoidosis > > >Subject: Re: Re: New to group > > >Date: Sat, 10 Apr 2004 05:25:10 -0700 (PDT) > > > > > >Wow, E, > > > You just described a lot of what's going on inside of me and "my head" too. I don't have any involvement of the lungs either. Did you have a confirmed diagnosis of Neurosarc? My neurologist gives me all those "remarks" that you say your friends give you. And that's coming from a dr. I know what my abilities were a little over a year ago, before they found the sarc and what my abilities are now with the memory, speech, forgetting what Im gonna say,etc. And I know this year has changed me so much. > > >But they still won't confirm neurosarc cause nothing has been seen on the xrays. > > >So don't feel you are alone , madmystk, Im right here, frustrated, right along side you! > > > Luv, Debbie T. > > > > > >madmystyk wrote: > > >Hi Cheryl, > > >Welcome to the group! I think you'll find a nice bunch of people ready > > >to share and hopefully help with problems from A-Z. > > >I don't have any real problems with my lungs so far, but man do I know > > >what it's like not to be able to find words that where once easy to > > >say. It is very frustrating! I'm waiting for the day that I can't > > >remember my name. I'm now at the point where at times I can't find my > > >way home from one of my many Doctor appointments. > > >People look at me like I'm drunk or high on drugs when I'm talking to > > >them. > > >More and more I keep to myself, it's too hard to constantly try to > > >explain to someone what's happening. Everybody thinks that they help > > >by saying " that happens to me all the time " , "I'm always forgetting > > >things too ", " We're just getting older ", etc..... > > >The only thing that does to me is make me crazier than I already am. > > >They have no idea what it's really like. If I didn't know that they > > >were trying to be nice I'd hit them in the head with something! > > >Being irritable, anxious and forgetting things is just a part of my > > >life now. > > >Some of the meds might make it worse, but I can feel my brain being > > >changed by the disease. The constant Pain makes everything worse. How > > >can you think of anything else when the pain is always ripping you > > >apart! The stress of the disease brought out the Bi-Polar disorder > > >that the Docs say has always been there. If I didn't take those meds I > > >would really go off the deep end. No matter how broke I am, I make > > >sure I get my "LOON" Pills. I don't want to lose the few friends I > > >have left. Talk about tempers! When I'm manic I can scare a house full > > >of Terrorists! and when I'm deppressed I can't get up out of bed to > > >take a shower! > > >I know it's hard on them to put up with me. I can't do much anymore > > >and I can't carry on a stimulating conversation! I'm not feeling sorry > > >for myself or trying to scare you. I'm just trying to give a little > > >insight on what goes on inside me and I think quite a few others with > > >this disease. I still understand what people say to me, but trying to > > >respond is very difficult at times. Sometimes I'm OK, but others it's > > >like my brain got stuck! > > >I'll stop rambling now, I do that a lot now too. I hope I helped a > > >little. Please feel free to ask anything you want and I'll do my best > > >to try and help. > > >BTW: What is TIA? > > >frankE, the "MadMystyk" > > >pacoepi@... > > > > > > > > > > > > > Hello everyone, > > > > My name is Cheryl and I live in Texas. I work at home which is > > >nice > > > > sometimes but gets very lonely because my husband works on the > > > > road. Anyway the reason for this post is my husband has sarcoid in > > > > the lungs. He was diagnosed about 24 years ago and has never taken > > > > anything except flovent. Wouldn't take the steroids because of the > > > > side effects. > > > > > > > > I've noticed over the last year that we've been together that he's > > > > gotten more irritable, anxious, forgets what he was going to say, > > > > etc and he's just steady gotten worse. > > > > > > > > About a month ago we were in Florida and he had two TIA's within 30 > > > > hours of each other. The emergency room there never even > > >considered > > > > the sarc. Released him and told him to take aspirin. He just > > > > happen to come home for a few days and he was very tired, no > > >energy, > > > > just didn't feel well. Well, the night before he was to leave he > > > > had another TIA. A very bad one. He couldn't get the words out > > > > etc. Back to the emergency room. This time I took him to the VA > > >in > > > > the Medical Center in Houston. Within about 2 hours after doing a > > > > spinal tap they diagnosed him with neurosarcoidosis in the > > > > meninges. The neuro doctor was the best. Started him on the > > > > steroids which the doctor told him if he didn't, it would just get > > > > worse and the next TIA could be a full blown stroke. > > > > > > > > So they let him out yesterday. He seems to be responding to the > > > > medications. He doesn't wheeze anymore. His head is a little more > > > > clearer. But....and there is always one he is even more impatient > > > > than he was, very moody. Is this a side effect of the drugs or is > > > > it the cause of the sarc? I'm very concerned. He tends of over > > > > react to things and if this gets worse, I'm not sure what he will > > > > do. I know some of the side effects are psychotic episodes. Any > > > > advice would be helpful. > > > > > > > > Thanks, > > > > Cheryl > > > > > > > > > > > > > > > > > >~~~~ *** ~~~ *** ~~~ *** ~~~~ > > >The Neurosarcoidosis Community > > > > > >Live Group Chat:- > > >Mondays & Fridays 10pm EST USA > > >http://www.elderwyn.com/neurosarcoidosis/chat.php > > > > > >Message Archives:- > > >http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > > >Members 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 April 24, 2004 Report Share Posted April 24, 2004 Debbie, I live in New Hampshire and see doctors in Boston at Beth Israel Medical Center. Where in New Hampshire do you live? I will be happy to provide you with the names of my Pulmonary doc and Neurologist. I just started Remicade last week and the first things to clear up were the lumps around my eyes and on my head. Cheryl In New Ipswich, NH Re: Re: New to group > > >Date: Sat, 10 Apr 2004 05:25:10 -0700 (PDT) > > > > > >Wow, E, > > > You just described a lot of what's going on inside of me and " my head " too. I don't have any involvement of the lungs either. Did you have a confirmed diagnosis of Neurosarc? My neurologist gives me all those " remarks " that you say your friends give you. And that's coming from a dr. I know what my abilities were a little over a year ago, before they found the sarc and what my abilities are now with the memory, speech, forgetting what Im gonna say,etc. And I know this year has changed me so much. > > >But they still won't confirm neurosarc cause nothing has been seen on the xrays. > > >So don't feel you are alone , madmystk, Im right here, frustrated, right along side you! > > > Luv, Debbie T. > > > > > >madmystyk wrote: > > >Hi Cheryl, > > >Welcome to the group! I think you'll find a nice bunch of people ready > > >to share and hopefully help with problems from A-Z. > > >I don't have any real problems with my lungs so far, but man do I know > > >what it's like not to be able to find words that where once easy to > > >say. It is very frustrating! I'm waiting for the day that I can't > > >remember my name. I'm now at the point where at times I can't find my > > >way home from one of my many Doctor appointments. > > >People look at me like I'm drunk or high on drugs when I'm talking to > > >them. > > >More and more I keep to myself, it's too hard to constantly try to > > >explain to someone what's happening. Everybody thinks that they help > > >by saying " that happens to me all the time " , " I'm always forgetting > > >things too " , " We're just getting older " , etc..... > > >The only thing that does to me is make me crazier than I already am. > > >They have no idea what it's really like. If I didn't know that they > > >were trying to be nice I'd hit them in the head with something! > > >Being irritable, anxious and forgetting things is just a part of my > > >life now. > > >Some of the meds might make it worse, but I can feel my brain being > > >changed by the disease. The constant Pain makes everything worse. How > > >can you think of anything else when the pain is always ripping you > > >apart! The stress of the disease brought out the Bi-Polar disorder > > >that the Docs say has always been there. If I didn't take those meds I > > >would really go off the deep end. No matter how broke I am, I make > > >sure I get my " LOON " Pills. I don't want to lose the few friends I > > >have left. Talk about tempers! When I'm manic I can scare a house full > > >of Terrorists! and when I'm deppressed I can't get up out of bed to > > >take a shower! > > >I know it's hard on them to put up with me. I can't do much anymore > > >and I can't carry on a stimulating conversation! I'm not feeling sorry > > >for myself or trying to scare you. I'm just trying to give a little > > >insight on what goes on inside me and I think quite a few others with > > >this disease. I still understand what people say to me, but trying to > > >respond is very difficult at times. Sometimes I'm OK, but others it's > > >like my brain got stuck! > > >I'll stop rambling now, I do that a lot now too. I hope I helped a > > >little. Please feel free to ask anything you want and I'll do my best > > >to try and help. > > >BTW: What is TIA? > > >frankE, the " MadMystyk " > > >pacoepi@... > > > > > > > > > > > > > Hello everyone, > > > > My name is Cheryl and I live in Texas. I work at home which is > > >nice > > > > sometimes but gets very lonely because my husband works on the > > > > road. Anyway the reason for this post is my husband has sarcoid in > > > > the lungs. He was diagnosed about 24 years ago and has never taken > > > > anything except flovent. Wouldn't take the steroids because of the > > > > side effects. > > > > > > > > I've noticed over the last year that we've been together that he's > > > > gotten more irritable, anxious, forgets what he was going to say, > > > > etc and he's just steady gotten worse. > > > > > > > > About a month ago we were in Florida and he had two TIA's within 30 > > > > hours of each other. The emergency room there never even > > >considered > > > > the sarc. Released him and told him to take aspirin. He just > > > > happen to come home for a few days and he was very tired, no > > >energy, > > > > just didn't feel well. Well, the night before he was to leave he > > > > had another TIA. A very bad one. He couldn't get the words out > > > > etc. Back to the emergency room. This time I took him to the VA > > >in > > > > the Medical Center in Houston. Within about 2 hours after doing a > > > > spinal tap they diagnosed him with neurosarcoidosis in the > > > > meninges. The neuro doctor was the best. Started him on the > > > > steroids which the doctor told him if he didn't, it would just get > > > > worse and the next TIA could be a full blown stroke. > > > > > > > > So they let him out yesterday. He seems to be responding to the > > > > medications. He doesn't wheeze anymore. His head is a little more > > > > clearer. But....and there is always one he is even more impatient > > > > than he was, very moody. Is this a side effect of the drugs or is > > > > it the cause of the sarc? I'm very concerned. He tends of over > > > > react to things and if this gets worse, I'm not sure what he will > > > > do. I know some of the side effects are psychotic episodes. Any > > > > advice would be helpful. > > > > > > > > Thanks, > > > > Cheryl > > > > > > > > > > > > > > > > > >~~~~ *** ~~~ *** ~~~ *** ~~~~ > > >The Neurosarcoidosis Community > > > > > >Live Group Chat:- > > >Mondays & Fridays 10pm EST USA > > >http://www.elderwyn.com/neurosarcoidosis/chat.php > > > > > >Message Archives:- > > >http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > > >Members 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 April 28, 2004 Report Share Posted April 28, 2004 My Heart goes out to you, Cheryl! My husband has true Neurosarcoidosis - it's not anywhere else in his body. His meds have increased and his condition has worsened fairly steadily. He wouldn't even take aspirin before, and now he takes 8 drugs regularly... I haven't had much time to post lately - I'm working 10-15 hours a day to support our family in addition to taking Gregg to all his doctor appointments and trying to be a Mom to 3 kids. He can no longer drive. Please know, though, that you both are in my thoughts and prayers! Love, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 My Heart goes out to you, Cheryl! My husband has true Neurosarcoidosis - it's not anywhere else in his body. His meds have increased and his condition has worsened fairly steadily. He wouldn't even take aspirin before, and now he takes 8 drugs regularly... I haven't had much time to post lately - I'm working 10-15 hours a day to support our family in addition to taking Gregg to all his doctor appointments and trying to be a Mom to 3 kids. He can no longer drive. Please know, though, that you both are in my thoughts and prayers! Love, Jeri Quote Link to comment Share on other sites More sharing options...
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