Guest guest Posted January 7, 2001 Report Share Posted January 7, 2001 > Hi my name is Carol and I had an Open RNY April 19, 1999. By Dr. > Parekh, Guelph, Ontario Canada. I have lost 150 pounds, 135 of that > was in the first year. I would like to lose another 25 pounds. I > have been on a plateau for months. It will be nice to be in group > with people at the same stage. >************ Hi, I'm Distal gastric bypass, 10/94 ( & 1/2000), 262 to 112 And my husband, same surgery, 10/95, 285 to 175 And we lived happily ever after, more or less :-) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2001 Report Share Posted January 7, 2001 > Hi my name is Carol and I had an Open RNY April 19, 1999. By Dr. > Parekh, Guelph, Ontario Canada. I have lost 150 pounds, 135 of that > was in the first year. I would like to lose another 25 pounds. I > have been on a plateau for months. It will be nice to be in group > with people at the same stage. >************ Hi, I'm Distal gastric bypass, 10/94 ( & 1/2000), 262 to 112 And my husband, same surgery, 10/95, 285 to 175 And we lived happily ever after, more or less :-) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2001 Report Share Posted January 7, 2001 > Hi my name is Carol and I had an Open RNY April 19, 1999. By Dr. > Parekh, Guelph, Ontario Canada. I have lost 150 pounds, 135 of that > was in the first year. I would like to lose another 25 pounds. I > have been on a plateau for months. It will be nice to be in group > with people at the same stage. >************ Hi, I'm Distal gastric bypass, 10/94 ( & 1/2000), 262 to 112 And my husband, same surgery, 10/95, 285 to 175 And we lived happily ever after, more or less :-) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2001 Report Share Posted January 7, 2001 Welcome, Carol!!! In Charlottesville, VA 3/31/99 - 318 1/7/01 - ~195 (+/-3 at any one time) Did hit 187 after Abdominoplasty, but then came the Holidays and water retention Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2001 Report Share Posted January 7, 2001 Welcome, Carol!!! In Charlottesville, VA 3/31/99 - 318 1/7/01 - ~195 (+/-3 at any one time) Did hit 187 after Abdominoplasty, but then came the Holidays and water retention Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 Welcome Phyliss! Congratulations on your weight loss. You are doing great! Glad you are with us. Blessings! Renonna ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 Welcome Phyliss! Congratulations on your weight loss. You are doing great! Glad you are with us. Blessings! Renonna ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 Welcome Phyliss! Congratulations on your weight loss. You are doing great! Glad you are with us. Blessings! Renonna ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2001 Report Share Posted March 3, 2001 new to group what is your name?? i have had pancreatitis all my life, i was born with it. i am 20 years old. i have had 1/4 of my pancreas removed at the tail end and rerouted into my colon. my gallbladder and my appendix were removed at the same time. i live in pain 24/7. they want to remove most of the rest of it but they don't know if it will help. Has it helped you?? what questions did you have about this disease?? Vicki (cal) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2001 Report Share Posted March 3, 2001 new to group what is your name?? i have had pancreatitis all my life, i was born with it. i am 20 years old. i have had 1/4 of my pancreas removed at the tail end and rerouted into my colon. my gallbladder and my appendix were removed at the same time. i live in pain 24/7. they want to remove most of the rest of it but they don't know if it will help. Has it helped you?? what questions did you have about this disease?? Vicki (cal) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2001 Report Share Posted March 3, 2001 Aahh....I'm so sorry you have had such a hard time with this awful illness, But I'm so glad you have found this place. These people, they are so smart! Anything you need to know, I'm sure they can answer, or post a link to a site that will help. You have really had alot of major surgeries! Yikes! How do you still work? Just courous. Again, welcome, and please forgive me tonight, it is the meds. Lots of Hugs, (from OH) ______________________________________________________________________ I am new so let me introduce myself. I have chronic pancreatitus. I must work for insurance. I would like to know about disability. My pancreatitus started with gall stones I wound up in intensive care for a week, in the hospital for 9 weeks. I have had 2 major surgeries (both for psuedo-cysts) , 11 CAT scans 3 ERCP's, several other procedures, 6 months of home tube feeding & 3 long hospital stays totalling 4 months all in the last 15 months . My gall bladder, spleen, 2/3 pancreas, some of my stomach, diaphram & liver have been removed. I am insulin dependent now, take enzymes, stomach & pain medication. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2001 Report Share Posted March 3, 2001 Aahh....I'm so sorry you have had such a hard time with this awful illness, But I'm so glad you have found this place. These people, they are so smart! Anything you need to know, I'm sure they can answer, or post a link to a site that will help. You have really had alot of major surgeries! Yikes! How do you still work? Just courous. Again, welcome, and please forgive me tonight, it is the meds. Lots of Hugs, (from OH) ______________________________________________________________________ I am new so let me introduce myself. I have chronic pancreatitus. I must work for insurance. I would like to know about disability. My pancreatitus started with gall stones I wound up in intensive care for a week, in the hospital for 9 weeks. I have had 2 major surgeries (both for psuedo-cysts) , 11 CAT scans 3 ERCP's, several other procedures, 6 months of home tube feeding & 3 long hospital stays totalling 4 months all in the last 15 months . My gall bladder, spleen, 2/3 pancreas, some of my stomach, diaphram & liver have been removed. I am insulin dependent now, take enzymes, stomach & pain medication. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Hi Pamela, Our children are very close in age. I have 3 year old triplets, , and . is my RSS child and also is profoundly deaf (he uses a cochlear implant to aid in his hearing). He's got a feeding tube, uses periactin, and eats when he feels like it. For size, he's 23 lbs., 32 " . We haven't started gh yet. Yes, my does have problems with vomiting. He was pediasure for almost a year and vomited a lot. We switched the formula to Peptamen Jr. in December and the vomiting has decreased somewhat, but is still very much there. If he gets upset or worked up, he vomits. And, yes he catches just about anything. If there's a cold in the air, he's got it. Stomach bug, he's got it. Right now he's battling bronchitis while my other two just have colds. It seems like we can never win. He seems to go about 3 weeks good, then 1 week down. My kids turned 3 February 9th and started preschool February 12th, so I know he's even going to get more stuff now. I don't think would starve himself if left to choose, but he definately would never gain much of anything without the aid of his feeding tube. We rely on that for 100% of his nutrition and what he eats is secondary. What is TPN? What is visceral hypersensitivity? Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2001 Report Share Posted June 1, 2001 - Krysti, Welcome to the group. This is a great place to be. I just wanted to say thank you because it does me a lot of good to hear about an RSS boy your son's age doing so well. We hear more from adult females, but not from males, and I think it would be harder for a man to be small than a woman. I worry about my son's future. He's 10 months old. Don't feel crazy for worrying about your son's future children already. One of my first thoughts when my son was diagnosed was how is he going to find a short wife. By the way, I could use some pointers on how you gave your son such high self esteem. Thanks! , Mom to n, 10 months, around 11 pounds. -- In RSS-Support@y..., " Krysti " <krysti@c...> wrote: > I just found this group last week and have read through all the emails that I received. I am a 36 year old single mother of two. My son who will be 16 in September has RSS and I have a 10 year old daughter who does not. After reading the emails about gastric tubes, Growth hormone therapy, dehydration...I feal very lucky. My son only had a feeding tube at one week old only due to reflux. I feal very " ignorant " I guess you could call it when it comes to RSS and the different aspects of it. Are the feeding tubes used to help the child to gain weight? I live in Texas and the endocrinologist that I took my son to when he was just a few months old was, to say the least....LOUSY and NONPROFESSIONAL. I never took him back. He was the only pediatric endo doctor around and I could have saved my money. Every doctor I took him to gave me the same xeroxed page on RSS. I'm guessing it was the only book that had any info in it on RSS. > I get the impression most of you have very young children with RSS. I think if I could offer any advice to anybody about a child with RSS is self esteem self esteem self esteem. Where my son...Matt...lacked in height...I gave him an ego...Man what an ego. I think I almost overdid in the self esteem department (with no regrets). He has an outstanding personality and was voted favorite freshman at the high school...not too bad out of 335 freshman. He is extremely intelligent. I can no longer help him with homework. He is 5' 1 " tall. He did not have Growth hormone therapy. I could not find enough info on that 16 years ago to put him through that. We were in and out of hospitals for one reason or another I guess for the first 6 months. After that, it went to just appointments for colds, infections, acne...whatever the illness may be for the time. After reading everyones emails, I'm wondering should I have been taking him to a specialist all along. I was feeling a twinge of guilt in reading all about doctors visits. > I just wanted to offer any help I could give to any of you with younger children as far as different behaviors and different signs...etc since my son is older. And I hope I can learn more about RSS from all of you. If any of you know, since you go to more doctors than I have been to...can you tell me if this RSS trait will be passed on to any of my sons children. Hopefully he wont have any until he gets out of Medical School but I need as much time to get him prepared with all the information I can give him and he would in turn need to inform what ever person he would get serious about. I know you probably think I'm crazy for worrying about this now, but it has been something I have always worried about since he went through puberty at 9 years old. I cant wait to hear from any of you and any info you can give me. Thank you. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2001 Report Share Posted June 2, 2001 Dear Krysti, It's so nice to hear from you and to learn about your son. Quite inspirational. It is late so I just wanted to offer one answer to your question about your son passing on RSS. I have a feeling that you have raised your son so well, and with such confidence, that some day if and when he is ready to have children, he wouldn't think twice about having a child, even if it means possibly (which by the way, the statistics don't bear it out. RSS kids are not more likely to have RSS children) having a son like him! The very fact that he is so confident and successful means that he has high regard for who he is. And, he would pass on those traits to any child. In other words, fatherhood and parenting can be part of his life. I think that is something to take great joy in. You should feel so proud that you raised your son the way you describe him. You did a great job with a kid who had " special " needs. He will too, if ever faced with the same. But, statistically, the chance of having RSS grandchildren, I believe, is not increased just because your son has RSS. Thanks so much for joining us! Katy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2001 Report Share Posted June 2, 2001 You do not need to feel guilty! If I hadn't found this group I wouldn't know anything about RSS other than my son 'seems to have' the characteristic facial features. The specialists have been little or no help, the only advantage being we will be offered growth hormone. However since they are not really sure yet whether it has an impact on adult height or just makes them reach it faster, at this stage I doubt we will consider it anyway. Also, my son Darcy (18 months) has no feeding tubes etc - NG tube first 3 months while he got strong enough to breastfeed - and no meds. So there is a big diversity within the group - the one thing the kids seem to share is a *big* personality <grin>. I hope you will stay and participate - it is always great to hear from parents with older kids! Steph (mum to Darcy 18 months, ?RSS, 6kg) > I just found this group last week and have read through all the emails that I received. I am a 36 year old single mother of two. My son who will be 16 in September has RSS and I have a 10 year old daughter who does not. After reading the emails about gastric tubes, Growth hormone therapy, dehydration...I feal very lucky. My son only had a feeding tube at one week old only due to reflux. I feal very " ignorant " I guess you could call it when it comes to RSS and the different aspects of it. Are the feeding tubes used to help the child to gain weight? I live in Texas and the endocrinologist that I took my son to when he was just a few months old was, to say the least....LOUSY and NONPROFESSIONAL. I never took him back. He was the only pediatric endo doctor around and I could have saved my money. Every doctor I took him to gave me the same xeroxed page on RSS. I'm guessing it was the only book that had any info in it on RSS. > I get the impression most of you have very young children with RSS. I think if I could offer any advice to anybody about a child with RSS is self esteem self esteem self esteem. Where my son...Matt...lacked in height...I gave him an ego...Man what an ego. I think I almost overdid in the self esteem department (with no regrets). He has an outstanding personality and was voted favorite freshman at the high school...not too bad out of 335 freshman. He is extremely intelligent. I can no longer help him with homework. He is 5' 1 " tall. He did not have Growth hormone therapy. I could not find enough info on that 16 years ago to put him through that. We were in and out of hospitals for one reason or another I guess for the first 6 months. After that, it went to just appointments for colds, infections, acne...whatever the illness may be for the time. After reading everyones emails, I'm wondering should I have been taking him to a specialist all along. I was feeling a twinge of guilt in reading all about doctors visits. > I just wanted to offer any help I could give to any of you with younger children as far as different behaviors and different signs...etc since my son is older. And I hope I can learn more about RSS from all of you. If any of you know, since you go to more doctors than I have been to...can you tell me if this RSS trait will be passed on to any of my sons children. Hopefully he wont have any until he gets out of Medical School but I need as much time to get him prepared with all the information I can give him and he would in turn need to inform what ever person he would get serious about. I know you probably think I'm crazy for worrying about this now, but it has been something I have always worried about since he went through puberty at 9 years old. I cant wait to hear from any of you and any info you can give me. Thank you. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2001 Report Share Posted June 2, 2001 Welcome to this group, Krysti, It has been an incredible support for me during the continual process of learning about RSS and dealing with so many related issues. Our daughter will be 3 at the end of September and we are considering beginning GH therapy. However just tonight my husband and I were discussing that so much more important than any drug therapy or growth intervention, the most valuable thing we can do for our daughter is to focus on building her self esteem. I want to encourage her to accept herself for who she is, all parts of herself, RSS, incredible personality, beauty, temper, impatience, sweetness,everything... Sounds like this is just what you have done for your son. He is a fortunate young man to have such a wise and supportive mother. By the way, I'd like a copy of those notes, if your handing them out. Thank you for sharing your story with us. Pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2001 Report Share Posted June 2, 2001 Welcome to this group, Krysti, It has been an incredible support for me during the continual process of learning about RSS and dealing with so many related issues. Our daughter will be 3 at the end of September and we are considering beginning GH therapy. However just tonight my husband and I were discussing that so much more important than any drug therapy or growth intervention, the most valuable thing we can do for our daughter is to focus on building her self esteem. I want to encourage her to accept herself for who she is, all parts of herself, RSS, incredible personality, beauty, temper, impatience, sweetness,everything... Sounds like this is just what you have done for your son. He is a fortunate young man to have such a wise and supportive mother. By the way, I'd like a copy of those notes, if your handing them out. Thank you for sharing your story with us. Pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2001 Report Share Posted June 2, 2001 Welcome to this group, Krysti, It has been an incredible support for me during the continual process of learning about RSS and dealing with so many related issues. Our daughter will be 3 at the end of September and we are considering beginning GH therapy. However just tonight my husband and I were discussing that so much more important than any drug therapy or growth intervention, the most valuable thing we can do for our daughter is to focus on building her self esteem. I want to encourage her to accept herself for who she is, all parts of herself, RSS, incredible personality, beauty, temper, impatience, sweetness,everything... Sounds like this is just what you have done for your son. He is a fortunate young man to have such a wise and supportive mother. By the way, I'd like a copy of those notes, if your handing them out. Thank you for sharing your story with us. Pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2001 Report Share Posted June 2, 2001 Dear Krysti, Oh, how I wish your email had come through to my computer! For some reason, I do not always receive all the RSS-Support emails. I had no idea you had posted a message until this morning when I read the replies. Fortunately, someone had not deleted your message after her reply, so I was able to read your original message. I am the mother of two children - Jenna, no RSS, 15, and Maxwell, RSS, almost 13 (one month from today!). If you have been reading messages for a few days, then you are already somewhat familiar with him, I assume. I am pretty verbal when it comes to sharing stories about Max. Anyway, I have to tell you that when I read your email, I could hear some distress and regret in the tone; however, I found, for myself, a lot of relief! You said your son is 5'1 " without gh treatment. I am praying that Max will be that height and he has been getting those shots for 10 years now. You also said that he is very social and well-liked. I can say that for Max, too. Many of us have commented on the social skills that our kids seem to have. People seem to gravitate to them. I am so thankful for that attribute. The other thing you mentioned was his intelligence. I am afraid that Max did not get his share in that department. While I know he is bright, he has learning disabilities and ADHD and an anxiety/panic disorder, so he is presently in a school for kids with LD and he is thriving and on top of the world. I don't blame RSS for that. I think that his undiagnosed hypoglycemia is the cause of that. I guess what the bottom line here is that I hear your concerns and feelings of " Did I do the right thing? " , but, on the other hand, you have inspired ME. I am not trying to negate your feelings; rather, I am trying to tell you that you have done a wonderful job!!! You have let all of us know that our kids have the potential to be healthy, happy young adults. You have gone ahead where most of us have not and succeeded. For that, I thank you. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2001 Report Share Posted June 2, 2001 Krysti, Where in Texas are you! We are also in Texas and we were quite unhappy with the ped endo we saw. We now travel to NY to see the most well known " RSS specialist " (at least on this list) in the US. Have you checked out the magic foundation! They have lots of info on RSS! magicfoundation.org Believe me it is worth checking out! Your son sounds great! My son is 5years 9 months old and also has a great personality! Is considered one of the favorites, not only in his kindergarten class, but pretty much in the school! Hope to hear more from you! Carmen, Mom to Storm (5y9m) RSS, 31.5#, 39 " and Paisley (8) (no RSS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 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 8, 2004 Report Share Posted April 8, 2004 Hi Cheryl, first let me say welcome to the group.. We are glad to have you aboard with us but we are sorry your husband is very sick... The symptoms you described in your email are very much like neurosarcoidosis.... and unfortunately we have lesions or small granuloma's or tumor like things in either our spinal cord or in the brain.. and this can cause psychosis.. I'm gonna share with you a little information site you need to read and this will help you understand a little bit about it.. It is very important that your hubby follows the plan that his doctors give him, he doesn't realize how lucky he is cause he actually has some one that knows about his disease, doctor wise that is.. so many of us don't even have doctors that have a clue what this is and have no clue what to do about it.. the sooner he gets treatment the better I believe he will be.. http://www.elderwyn.com/neurosarcoidosis/ this will give you a idea as what you can expect... This is a very life changing disease, its one that can be very scary..and warrants your husband to be very careful and follow his doctors orders carefully.. Good luck to you and him, and if you need us we are here for you... Hugs, -- 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 CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Hi Cheryl, first let me say welcome to the group.. We are glad to have you aboard with us but we are sorry your husband is very sick... The symptoms you described in your email are very much like neurosarcoidosis.... and unfortunately we have lesions or small granuloma's or tumor like things in either our spinal cord or in the brain.. and this can cause psychosis.. I'm gonna share with you a little information site you need to read and this will help you understand a little bit about it.. It is very important that your hubby follows the plan that his doctors give him, he doesn't realize how lucky he is cause he actually has some one that knows about his disease, doctor wise that is.. so many of us don't even have doctors that have a clue what this is and have no clue what to do about it.. the sooner he gets treatment the better I believe he will be.. http://www.elderwyn.com/neurosarcoidosis/ this will give you a idea as what you can expect... This is a very life changing disease, its one that can be very scary..and warrants your husband to be very careful and follow his doctors orders carefully.. Good luck to you and him, and if you need us we are here for you... Hugs, -- 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 CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted 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...
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