Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 Cheryl, this can be the side affects from the steroids especially if he is on Prednisone. The TIA'a can also affect him as well. Good luck and you may want to ask his doctor for the side affects or better yet, get his medicine bottles and look up the meds on the internet. You will find a lot of info on them. Sharon > > > Date: Thu Apr 8, 5:20 PM > To: Neurosarcoidosis > Subject: New to group > > 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 9, 2004 Report Share Posted April 9, 2004 Cheryl, this can be the side affects from the steroids especially if he is on Prednisone. The TIA'a can also affect him as well. Good luck and you may want to ask his doctor for the side affects or better yet, get his medicine bottles and look up the meds on the internet. You will find a lot of info on them. Sharon > > > Date: Thu Apr 8, 5:20 PM > To: Neurosarcoidosis > Subject: New to group > > 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 9, 2004 Report Share Posted April 9, 2004 Cheryl, this can be the side affects from the steroids especially if he is on Prednisone. The TIA'a can also affect him as well. Good luck and you may want to ask his doctor for the side affects or better yet, get his medicine bottles and look up the meds on the internet. You will find a lot of info on them. Sharon > > > Date: Thu Apr 8, 5:20 PM > To: Neurosarcoidosis > Subject: New to group > > 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 9, 2004 Report Share Posted April 9, 2004 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. Hi Cheryl,-- this is what happens when sarcoidosis becomes systemic and neuro. The exhaustion and fatigue are so very, very overwhelming. Your husband really needs treatment to get this under control. 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. Most excellant-- and remember, steriods (Prednisone) can raise his blood pressure as well as increase his anxiety and psychosis. Many (as in almost all) of us are on an anti-depressant/anti-anxiety medication primarily due to the medications we're on. You end up taking one to counteract the side-effects, but I can tell you first hand, it is worth it to be able to function without beheading everyone around you. 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. Anti-depressants like Effexor XR or Wellbutrin XL work very well. This disease can effect the brain by way of vasculitis or granulomas in the brain, and we need the help to counteract the areas of the brain that are being effected. Cheryl, I am the most laid back person- but put me on Prednisone and my 5'1" body will move mountains, and if it's family, friends or someone cutting me off in traffic-- I can go ballistic. Know this is both the disease and it not being treated, and that if you can handle the ride, both you and hubby will be better once he starts getting this under control. In the meantime, know we're here for both of you. Compassionately, Tracie NS Co-owner/moderater Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 Yes, he is on Prednisone. But he was already like this before. He would blow up at the smallest thing. Completely blow everything out of proportion and now it's even worse. They gave me the prednisone through a IV when he was in the hospital and now he's it taking 20 mg three times a day. I think he's having the withdraws that I read can happen with this medication. He's definetly not the person that he was. I'm just not sure I can deal with it. I get the brunt of it all. If something doesn't go the way he wants it, it's my fault. Dealing with him makes my blood pressure go up, and that is very dangerous for me because I only have one kidney. I'll deal with it as long as I can. Thanks everyone for your support. Cheryl > Cheryl, this can be the side affects from the steroids especially if he is on Prednisone. > > The TIA'a can also affect him as well. > > Good luck and you may want to ask his doctor for the side affects or better yet, get his medicine bottles and look up the meds on the internet. You will find a lot of info on them. > > Sharon > > > > From: " cheryljones69 " <editing4u@e...> > > Date: Thu Apr 8, 5:20 PM > > To: Neurosarcoidosis > > Subject: New to group > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 Yes, he is on Prednisone. But he was already like this before. He would blow up at the smallest thing. Completely blow everything out of proportion and now it's even worse. They gave me the prednisone through a IV when he was in the hospital and now he's it taking 20 mg three times a day. I think he's having the withdraws that I read can happen with this medication. He's definetly not the person that he was. I'm just not sure I can deal with it. I get the brunt of it all. If something doesn't go the way he wants it, it's my fault. Dealing with him makes my blood pressure go up, and that is very dangerous for me because I only have one kidney. I'll deal with it as long as I can. Thanks everyone for your support. Cheryl > Cheryl, this can be the side affects from the steroids especially if he is on Prednisone. > > The TIA'a can also affect him as well. > > Good luck and you may want to ask his doctor for the side affects or better yet, get his medicine bottles and look up the meds on the internet. You will find a lot of info on them. > > Sharon > > > > From: " cheryljones69 " <editing4u@e...> > > Date: Thu Apr 8, 5:20 PM > > To: Neurosarcoidosis > > Subject: New to group > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 The prednisone causes mood swings, and the TIAs were no help either. They are Trans Ischemic Attacks, fore runner of stroke. I person will have mood swings even with these and they are made worse with the Prednisone. Most of us that was on Prednisone took it all at once. Sharon > > > Date: Fri Apr 9, 9:23 PM > To: Neurosarcoidosis > Subject: Re: New to group > > Yes, he is on Prednisone. But he was already like this before. He would blow up at the smallest thing. Completely blow everything out of proportion and now it's even worse. They gave me the prednisone through a IV when he was in the hospital and now he's it taking 20 mg three times a day. I think he's having the withdraws that I read can happen with this medication. He's definetly not the person that he was. I'm just not sure I can deal with it. I get the brunt of it all. If something doesn't go the way he wants it, it's my fault. Dealing with him makes my blood pressure go up, and that is very dangerous for me because I only have one kidney. I'll deal with it as long as I can. Thanks everyone for your support. Cheryl > Cheryl, this can be the side affects from the steroids especially if he is on Prednisone. > > The TIA'a can also affect him as well. > > Good luck and you may want to ask his doctor for the side affects or better yet, get his medicine bottles and look up the meds on the internet. You will find a lot of info on them. > > Sharon > > > > From: " cheryljones69 " <editing4u@e...> > > Date: Thu Apr 8, 5:20 PM > > To: Neurosarcoidosis > > Subject: New to group > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ 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 9, 2004 Report Share Posted April 9, 2004 The prednisone causes mood swings, and the TIAs were no help either. They are Trans Ischemic Attacks, fore runner of stroke. I person will have mood swings even with these and they are made worse with the Prednisone. Most of us that was on Prednisone took it all at once. Sharon > > > Date: Fri Apr 9, 9:23 PM > To: Neurosarcoidosis > Subject: Re: New to group > > Yes, he is on Prednisone. But he was already like this before. He would blow up at the smallest thing. Completely blow everything out of proportion and now it's even worse. They gave me the prednisone through a IV when he was in the hospital and now he's it taking 20 mg three times a day. I think he's having the withdraws that I read can happen with this medication. He's definetly not the person that he was. I'm just not sure I can deal with it. I get the brunt of it all. If something doesn't go the way he wants it, it's my fault. Dealing with him makes my blood pressure go up, and that is very dangerous for me because I only have one kidney. I'll deal with it as long as I can. Thanks everyone for your support. Cheryl > Cheryl, this can be the side affects from the steroids especially if he is on Prednisone. > > The TIA'a can also affect him as well. > > Good luck and you may want to ask his doctor for the side affects or better yet, get his medicine bottles and look up the meds on the internet. You will find a lot of info on them. > > Sharon > > > > From: " cheryljones69 " <editing4u@e...> > > Date: Thu Apr 8, 5:20 PM > > To: Neurosarcoidosis > > Subject: New to group > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ 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 9, 2004 Report Share Posted April 9, 2004 The prednisone causes mood swings, and the TIAs were no help either. They are Trans Ischemic Attacks, fore runner of stroke. I person will have mood swings even with these and they are made worse with the Prednisone. Most of us that was on Prednisone took it all at once. Sharon > > > Date: Fri Apr 9, 9:23 PM > To: Neurosarcoidosis > Subject: Re: New to group > > Yes, he is on Prednisone. But he was already like this before. He would blow up at the smallest thing. Completely blow everything out of proportion and now it's even worse. They gave me the prednisone through a IV when he was in the hospital and now he's it taking 20 mg three times a day. I think he's having the withdraws that I read can happen with this medication. He's definetly not the person that he was. I'm just not sure I can deal with it. I get the brunt of it all. If something doesn't go the way he wants it, it's my fault. Dealing with him makes my blood pressure go up, and that is very dangerous for me because I only have one kidney. I'll deal with it as long as I can. Thanks everyone for your support. Cheryl > Cheryl, this can be the side affects from the steroids especially if he is on Prednisone. > > The TIA'a can also affect him as well. > > Good luck and you may want to ask his doctor for the side affects or better yet, get his medicine bottles and look up the meds on the internet. You will find a lot of info on them. > > Sharon > > > > From: " cheryljones69 " <editing4u@e...> > > Date: Thu Apr 8, 5:20 PM > > To: Neurosarcoidosis > > Subject: New to group > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ 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 10, 2004 Report Share Posted April 10, 2004 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 readyto 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 knowwhat it's like not to be able to find words that where once easy tosay. It is very frustrating! I'm waiting for the day that I can'tremember my name. I'm now at the point where at times I can't find myway home from one of my many Doctor appointments. People look at me like I'm drunk or high on drugs when I'm talking tothem. More and more I keep to myself, it's too hard to constantly try toexplain to someone what's happening. Everybody thinks that they helpby saying " that happens to me all the time " , "I'm always forgettingthings 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 theywere trying to be nice I'd hit them in the head with something!Being irritable, anxious and forgetting things is just a part of mylife now. Some of the meds might make it worse, but I can feel my brain beingchanged by the disease. The constant Pain makes everything worse. Howcan you think of anything else when the pain is always ripping youapart! The stress of the disease brought out the Bi-Polar disorderthat the Docs say has always been there. If I didn't take those meds Iwould really go off the deep end. No matter how broke I am, I makesure I get my "LOON" Pills. I don't want to lose the few friends Ihave left. Talk about tempers! When I'm manic I can scare a house fullof Terrorists! and when I'm deppressed I can't get up out of bed totake a shower!I know it's hard on them to put up with me. I can't do much anymoreand I can't carry on a stimulating conversation! I'm not feeling sorryfor myself or trying to scare you. I'm just trying to give a littleinsight on what goes on inside me and I think quite a few others withthis disease. I still understand what people say to me, but trying torespond is very difficult at times. Sometimes I'm OK, but others it'slike my brain got stuck! I'll stop rambling now, I do that a lot now too. I hope I helped alittle. Please feel free to ask anything you want and I'll do my bestto 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 isnice > 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 evenconsidered > 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, noenergy, > 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 VAin > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2004 Report Share Posted April 10, 2004 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 readyto 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 knowwhat it's like not to be able to find words that where once easy tosay. It is very frustrating! I'm waiting for the day that I can'tremember my name. I'm now at the point where at times I can't find myway home from one of my many Doctor appointments. People look at me like I'm drunk or high on drugs when I'm talking tothem. More and more I keep to myself, it's too hard to constantly try toexplain to someone what's happening. Everybody thinks that they helpby saying " that happens to me all the time " , "I'm always forgettingthings 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 theywere trying to be nice I'd hit them in the head with something!Being irritable, anxious and forgetting things is just a part of mylife now. Some of the meds might make it worse, but I can feel my brain beingchanged by the disease. The constant Pain makes everything worse. Howcan you think of anything else when the pain is always ripping youapart! The stress of the disease brought out the Bi-Polar disorderthat the Docs say has always been there. If I didn't take those meds Iwould really go off the deep end. No matter how broke I am, I makesure I get my "LOON" Pills. I don't want to lose the few friends Ihave left. Talk about tempers! When I'm manic I can scare a house fullof Terrorists! and when I'm deppressed I can't get up out of bed totake a shower!I know it's hard on them to put up with me. I can't do much anymoreand I can't carry on a stimulating conversation! I'm not feeling sorryfor myself or trying to scare you. I'm just trying to give a littleinsight on what goes on inside me and I think quite a few others withthis disease. I still understand what people say to me, but trying torespond is very difficult at times. Sometimes I'm OK, but others it'slike my brain got stuck! I'll stop rambling now, I do that a lot now too. I hope I helped alittle. Please feel free to ask anything you want and I'll do my bestto 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 isnice > 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 evenconsidered > 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, noenergy, > 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 VAin > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2004 Report Share Posted April 10, 2004 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 readyto 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 knowwhat it's like not to be able to find words that where once easy tosay. It is very frustrating! I'm waiting for the day that I can'tremember my name. I'm now at the point where at times I can't find myway home from one of my many Doctor appointments. People look at me like I'm drunk or high on drugs when I'm talking tothem. More and more I keep to myself, it's too hard to constantly try toexplain to someone what's happening. Everybody thinks that they helpby saying " that happens to me all the time " , "I'm always forgettingthings 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 theywere trying to be nice I'd hit them in the head with something!Being irritable, anxious and forgetting things is just a part of mylife now. Some of the meds might make it worse, but I can feel my brain beingchanged by the disease. The constant Pain makes everything worse. Howcan you think of anything else when the pain is always ripping youapart! The stress of the disease brought out the Bi-Polar disorderthat the Docs say has always been there. If I didn't take those meds Iwould really go off the deep end. No matter how broke I am, I makesure I get my "LOON" Pills. I don't want to lose the few friends Ihave left. Talk about tempers! When I'm manic I can scare a house fullof Terrorists! and when I'm deppressed I can't get up out of bed totake a shower!I know it's hard on them to put up with me. I can't do much anymoreand I can't carry on a stimulating conversation! I'm not feeling sorryfor myself or trying to scare you. I'm just trying to give a littleinsight on what goes on inside me and I think quite a few others withthis disease. I still understand what people say to me, but trying torespond is very difficult at times. Sometimes I'm OK, but others it'slike my brain got stuck! I'll stop rambling now, I do that a lot now too. I hope I helped alittle. Please feel free to ask anything you want and I'll do my bestto 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 isnice > 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 evenconsidered > 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, noenergy, > 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 VAin > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2004 Report Share Posted April 10, 2004 Cheryl, Prednisone is a nasty drug but necessary sometimes....I was on it and just cannot tolerate it at all! I don't have any answers for you except to tell you that you know you can vent here anytime and that we are here for you....never forget that....we are a support group and you can tell us anything. Sending hugs and prayers, Darlene > > > > Yes, he is on Prednisone. But he was already like this before. He > would blow up at the smallest thing. Completely blow everything out > of proportion and now it's even worse. They gave me the prednisone > through a IV when he was in the hospital and now he's it taking 20 > mg three times a day. I think he's having the withdraws that I read > can happen with this medication. He's definetly not the person that > he was. I'm just not sure I can deal with it. I get the brunt of > it all. If something doesn't go the way he wants it, it's my > fault. Dealing with him makes my blood pressure go up, and that is > very dangerous for me because I only have one kidney. I'll deal > with it as long as I can. > > Thanks everyone for your support. > Cheryl > > > > > --- In Neurosarcoidosis , >;jerryc2@b... > > if he is on Prednisone. > > > > > or better yet, get his medicine bottles and look up the meds on the > internet. You will find a lot of info on them. > > > > ;editing4u@e... > > > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > 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 10, 2004 Report Share Posted April 10, 2004 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 10, 2004 Report Share Posted April 10, 2004 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 14, 2004 Report Share Posted April 14, 2004 Okay thanks . I will try that, Jeanna's lesser half!!!!! lol Debbie T.eanna 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 14, 2004 Report Share Posted April 14, 2004 Okay thanks . I will try that, Jeanna's lesser half!!!!! lol Debbie T.eanna 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 14, 2004 Report Share Posted April 14, 2004 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. DebbieJeanna 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 15, 2004 Report Share Posted April 15, 2004 Debbie, please disregard that last post, I fell asleep at the computer instead of at the wheel, at least we know I can type while I sleep and I guess when I was asleep I was thinking of Jan's surgery. Not that I wouldn't send you a card but what I as putting on the card didn't coincide with you at all. I hope everything goes well with you and Dr. O'Grady, he is a neurosurgeon but I know if he can point you in the right direction he will. He is very compassionate and caring. 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 15, 2004 Report Share Posted April 15, 2004 Debbie, please disregard that last post, I fell asleep at the computer instead of at the wheel, at least we know I can type while I sleep and I guess when I was asleep I was thinking of Jan's surgery. Not that I wouldn't send you a card but what I as putting on the card didn't coincide with you at all. I hope everything goes well with you and Dr. O'Grady, he is a neurosurgeon but I know if he can point you in the right direction he will. He is very compassionate and caring. 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 15, 2004 Report Share Posted April 15, 2004 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 15, 2004 Report Share Posted April 15, 2004 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 15, 2004 Report Share Posted April 15, 2004 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, Debbienna 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 15, 2004 Report Share Posted April 15, 2004 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, Debbienna 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...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.