Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Hi, Tammy, welcome to the group. We are glad you found us, but it's a heck of a way to find new friends, huh? You will find this group knowledgeable, compassionate, courageous, funny, open to learning more & new info and willing to share our fears, our victories, our rage, our perseverance, our comfort, and pretty much any thing else you can think of. Don't be afraid to ask questions & challenge us; we can all get into ruts & every person has something to contribute, as well as needs to be met. Would you mind sharing some info with us, to help us give you some guidance & support? Where do you live? Are you satisfied that your medical team is knowledgeable about the latest research on sarc & treatment options? What drugs have you been treated with & how did that work out? What kind of heart problems do you have? Any personal info you'd like to share? I'm 57, divorced x10 years, 3 grown children & 8 grandkids. I'm been on disability for over 2 years after working as a nurse for 10 years & then a nurse-midwife for 20 years. I have systemic, pulmonary & neurologic sarcoidosis. The lungs aren't bad most of the time. The worst symptoms are severe neuropathic pain in my feet, severe fatigue & muscle weakness, hearing loss, memory loss & mental "fatigue" & loss of focus. I find it difficult to drive much because just pressing on the pedals increases the pain in my feet to the point I start using the side of my foot or the arch. My 16 yo granddaughter Sam lives with me & does most of the driving. I also share my home with my 83 yo mother, 2 dogs & 2 cats. I know you will get responses from many other members, but remember that we are all sick in varying degrees & sometimes it takes a couple of days or more to get a response. Hugs & welcome again, from Indiana. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: hello new to groupDate: Sat, 11 Mar 2006 05:44:52 -0000Hello, my name is Tammy and i have been diagnosed with Sarcoid for over two years. It started with severe pain and selling in my ankles and pain in my back and chest. It was very painful to take in a breath. CT scan was done showing lymphadenopathy and nodules in my lungs. Diagnosis was confirmed by mediastinoscopy. Since then it has traveled to my heart and recently my Dr. is having me evaluated for neuro sarcoid. I pray every day for remission but until then its one day at a time. It will be nice to be able to share with others. Thanks~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Hi, Tammy, welcome to the group. We are glad you found us, but it's a heck of a way to find new friends, huh? You will find this group knowledgeable, compassionate, courageous, funny, open to learning more & new info and willing to share our fears, our victories, our rage, our perseverance, our comfort, and pretty much any thing else you can think of. Don't be afraid to ask questions & challenge us; we can all get into ruts & every person has something to contribute, as well as needs to be met. Would you mind sharing some info with us, to help us give you some guidance & support? Where do you live? Are you satisfied that your medical team is knowledgeable about the latest research on sarc & treatment options? What drugs have you been treated with & how did that work out? What kind of heart problems do you have? Any personal info you'd like to share? I'm 57, divorced x10 years, 3 grown children & 8 grandkids. I'm been on disability for over 2 years after working as a nurse for 10 years & then a nurse-midwife for 20 years. I have systemic, pulmonary & neurologic sarcoidosis. The lungs aren't bad most of the time. The worst symptoms are severe neuropathic pain in my feet, severe fatigue & muscle weakness, hearing loss, memory loss & mental "fatigue" & loss of focus. I find it difficult to drive much because just pressing on the pedals increases the pain in my feet to the point I start using the side of my foot or the arch. My 16 yo granddaughter Sam lives with me & does most of the driving. I also share my home with my 83 yo mother, 2 dogs & 2 cats. I know you will get responses from many other members, but remember that we are all sick in varying degrees & sometimes it takes a couple of days or more to get a response. Hugs & welcome again, from Indiana. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: hello new to groupDate: Sat, 11 Mar 2006 05:44:52 -0000Hello, my name is Tammy and i have been diagnosed with Sarcoid for over two years. It started with severe pain and selling in my ankles and pain in my back and chest. It was very painful to take in a breath. CT scan was done showing lymphadenopathy and nodules in my lungs. Diagnosis was confirmed by mediastinoscopy. Since then it has traveled to my heart and recently my Dr. is having me evaluated for neuro sarcoid. I pray every day for remission but until then its one day at a time. It will be nice to be able to share with others. Thanks~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Hi, Tammy, welcome to the group. We are glad you found us, but it's a heck of a way to find new friends, huh? You will find this group knowledgeable, compassionate, courageous, funny, open to learning more & new info and willing to share our fears, our victories, our rage, our perseverance, our comfort, and pretty much any thing else you can think of. Don't be afraid to ask questions & challenge us; we can all get into ruts & every person has something to contribute, as well as needs to be met. Would you mind sharing some info with us, to help us give you some guidance & support? Where do you live? Are you satisfied that your medical team is knowledgeable about the latest research on sarc & treatment options? What drugs have you been treated with & how did that work out? What kind of heart problems do you have? Any personal info you'd like to share? I'm 57, divorced x10 years, 3 grown children & 8 grandkids. I'm been on disability for over 2 years after working as a nurse for 10 years & then a nurse-midwife for 20 years. I have systemic, pulmonary & neurologic sarcoidosis. The lungs aren't bad most of the time. The worst symptoms are severe neuropathic pain in my feet, severe fatigue & muscle weakness, hearing loss, memory loss & mental "fatigue" & loss of focus. I find it difficult to drive much because just pressing on the pedals increases the pain in my feet to the point I start using the side of my foot or the arch. My 16 yo granddaughter Sam lives with me & does most of the driving. I also share my home with my 83 yo mother, 2 dogs & 2 cats. I know you will get responses from many other members, but remember that we are all sick in varying degrees & sometimes it takes a couple of days or more to get a response. Hugs & welcome again, from Indiana. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: hello new to groupDate: Sat, 11 Mar 2006 05:44:52 -0000Hello, my name is Tammy and i have been diagnosed with Sarcoid for over two years. It started with severe pain and selling in my ankles and pain in my back and chest. It was very painful to take in a breath. CT scan was done showing lymphadenopathy and nodules in my lungs. Diagnosis was confirmed by mediastinoscopy. Since then it has traveled to my heart and recently my Dr. is having me evaluated for neuro sarcoid. I pray every day for remission but until then its one day at a time. It will be nice to be able to share with others. Thanks~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 Hi Tammy, I am so sorry you have to deal with this disease. It is a challenge. You'll find we have about 370 members or so, and most all of us have sarcoidosis. I've been living with sarc for 16 yrs. It started in my eyes and lungs. Now it is systemic--heart, lung, liver, muscles joints, ligaments--bones-- brain. I've done years on high dose sterioids- and am now on Remicade, Plaquenil and Methotrexate. The Remicade has been amazing-- I can generally complete sentences-- a huge improvement, and have been able to get off my oxygen during the day time. The cusp of one of the main valves is calcified due to sarc--so it no longer shuts properly. I deal with a bit of atrial fibrillation (rapid heart beat) and so far haven't required a pacemaker or meds. I hope that is years down the road. You'll find a wealth of information here, as well as develop some great friendships. We have 2 owners and 3 additional moderators. So generally speaking, we try to get questions and concerns answered daily--but once in a great while-- we'll all be in flare, so it may be a day or so. Welcome to the family, Tracie NS Co-owner/moderator PS. If you scroll down, you'll find the site address for our LINKS and ARCHIVES. There is a wealth of info, and you can print out what you need and take it to your MD's. It sounds as though you've got a good team already--so you are one step ahead of alot of the gang. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 Rose, Thank you for the warm welcome. I am 37 and live with my family in Bakersfield, CA.. My husband and I have three children our oldest is 13, Devyn is 11, and Adin our baby is almost three. I have a wonderful family Dr. here. She is not a specialist but she does a lot of research into my disease and she communicates with Dr. Sharma(sarcoid specialist)over the phone often to discuse my treatment plans. The one thing I love about my Dr. is I can talk to her about anything and she listens. Others Drs. in the past have made me feel like I was crazy when I discussed the problems I was having. Ok, so heres the long version of my illness. I have had aches and pains in my joints for a very long time. I would just be sitting and sometimes my joints would swell. I wasn't able to participate in PE becouse of the pain. I saw so several Drs. who were unable to help so I learned at a young age that I just had to deal with the pain.We went through the first two pregnancies fine but after my last the sarcoid was exaacerbated. I had extreme faatique and pain in my joints inititally. This soon turned into severe pain in my chest and back. I thought I was having a heart attack at first. After suffering for two weeks they got an CT which showed bilateral hilar lympadenopathy and some spots in my lungs. Mediastinoscopy diagnosed the sarcoid. I was put on 60mg prednisone and plaquinal. The steroids helped but we didn't feel we were getting anything out of the plaquinal so we switched to methotrexate. Then I was feeling very bad, short of breath and was retainig a lot of fluid. This was the start of my heart problems. I have CHF, csrdiomyopathy, and some problems with my electrical system. I have been evaluated for heart transplantation because of a very low ejection fraction But, for right now my meds are helping. I have been in respiratory failure twice last year. the worst was when the paramedics needed to bag me and my kids were there crying but I perservered. last May was renal failure month for me, I was so sick. There not sure what caused it but they suspect that my heart waan't pumping correctly and was allowing my meds to build up in my system. So presently I am off the prednisone and methyltrexate because my heart doctors didn't like them. I am taking lodine, trental, and colchicine. They give me minimal relive. My Dr. here is talking to the cancer center here to try and get me on Remicade. Dr. Sharma thinks it may help. Recently I have been having difficulty swallowing, nausea, dizziness, confusion, and headaches. I have fallen twice, the last time breaking my right arm. My Dr. sent me in for an ENG test which showed I have no balance in my right ear and showed some hearing loss. This has all happened since the sarcoid diagnosis. I am worried that the Sarc my be in my neuro system now. So I'm sure I will get to see a whole new bunch of Drs. to evaluate this new problem. It gets old having to explain everything all over to every new Dr. but its worth it. Some times I get a little down and wonder what else could happen but I look over at my kids and I know that I have to get through this for them. Hope this wasn't too long winded and was able to give you a better understanding of me. Oh, by the way, I am a nurse also. I have been on disability just over two years also. I loved my work and I can't wait until I feel well enough to go back. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 Rose, Thank you for the warm welcome. I am 37 and live with my family in Bakersfield, CA.. My husband and I have three children our oldest is 13, Devyn is 11, and Adin our baby is almost three. I have a wonderful family Dr. here. She is not a specialist but she does a lot of research into my disease and she communicates with Dr. Sharma(sarcoid specialist)over the phone often to discuse my treatment plans. The one thing I love about my Dr. is I can talk to her about anything and she listens. Others Drs. in the past have made me feel like I was crazy when I discussed the problems I was having. Ok, so heres the long version of my illness. I have had aches and pains in my joints for a very long time. I would just be sitting and sometimes my joints would swell. I wasn't able to participate in PE becouse of the pain. I saw so several Drs. who were unable to help so I learned at a young age that I just had to deal with the pain.We went through the first two pregnancies fine but after my last the sarcoid was exaacerbated. I had extreme faatique and pain in my joints inititally. This soon turned into severe pain in my chest and back. I thought I was having a heart attack at first. After suffering for two weeks they got an CT which showed bilateral hilar lympadenopathy and some spots in my lungs. Mediastinoscopy diagnosed the sarcoid. I was put on 60mg prednisone and plaquinal. The steroids helped but we didn't feel we were getting anything out of the plaquinal so we switched to methotrexate. Then I was feeling very bad, short of breath and was retainig a lot of fluid. This was the start of my heart problems. I have CHF, csrdiomyopathy, and some problems with my electrical system. I have been evaluated for heart transplantation because of a very low ejection fraction But, for right now my meds are helping. I have been in respiratory failure twice last year. the worst was when the paramedics needed to bag me and my kids were there crying but I perservered. last May was renal failure month for me, I was so sick. There not sure what caused it but they suspect that my heart waan't pumping correctly and was allowing my meds to build up in my system. So presently I am off the prednisone and methyltrexate because my heart doctors didn't like them. I am taking lodine, trental, and colchicine. They give me minimal relive. My Dr. here is talking to the cancer center here to try and get me on Remicade. Dr. Sharma thinks it may help. Recently I have been having difficulty swallowing, nausea, dizziness, confusion, and headaches. I have fallen twice, the last time breaking my right arm. My Dr. sent me in for an ENG test which showed I have no balance in my right ear and showed some hearing loss. This has all happened since the sarcoid diagnosis. I am worried that the Sarc my be in my neuro system now. So I'm sure I will get to see a whole new bunch of Drs. to evaluate this new problem. It gets old having to explain everything all over to every new Dr. but its worth it. Some times I get a little down and wonder what else could happen but I look over at my kids and I know that I have to get through this for them. Hope this wasn't too long winded and was able to give you a better understanding of me. Oh, by the way, I am a nurse also. I have been on disability just over two years also. I loved my work and I can't wait until I feel well enough to go back. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 Rose, Thank you for the warm welcome. I am 37 and live with my family in Bakersfield, CA.. My husband and I have three children our oldest is 13, Devyn is 11, and Adin our baby is almost three. I have a wonderful family Dr. here. She is not a specialist but she does a lot of research into my disease and she communicates with Dr. Sharma(sarcoid specialist)over the phone often to discuse my treatment plans. The one thing I love about my Dr. is I can talk to her about anything and she listens. Others Drs. in the past have made me feel like I was crazy when I discussed the problems I was having. Ok, so heres the long version of my illness. I have had aches and pains in my joints for a very long time. I would just be sitting and sometimes my joints would swell. I wasn't able to participate in PE becouse of the pain. I saw so several Drs. who were unable to help so I learned at a young age that I just had to deal with the pain.We went through the first two pregnancies fine but after my last the sarcoid was exaacerbated. I had extreme faatique and pain in my joints inititally. This soon turned into severe pain in my chest and back. I thought I was having a heart attack at first. After suffering for two weeks they got an CT which showed bilateral hilar lympadenopathy and some spots in my lungs. Mediastinoscopy diagnosed the sarcoid. I was put on 60mg prednisone and plaquinal. The steroids helped but we didn't feel we were getting anything out of the plaquinal so we switched to methotrexate. Then I was feeling very bad, short of breath and was retainig a lot of fluid. This was the start of my heart problems. I have CHF, csrdiomyopathy, and some problems with my electrical system. I have been evaluated for heart transplantation because of a very low ejection fraction But, for right now my meds are helping. I have been in respiratory failure twice last year. the worst was when the paramedics needed to bag me and my kids were there crying but I perservered. last May was renal failure month for me, I was so sick. There not sure what caused it but they suspect that my heart waan't pumping correctly and was allowing my meds to build up in my system. So presently I am off the prednisone and methyltrexate because my heart doctors didn't like them. I am taking lodine, trental, and colchicine. They give me minimal relive. My Dr. here is talking to the cancer center here to try and get me on Remicade. Dr. Sharma thinks it may help. Recently I have been having difficulty swallowing, nausea, dizziness, confusion, and headaches. I have fallen twice, the last time breaking my right arm. My Dr. sent me in for an ENG test which showed I have no balance in my right ear and showed some hearing loss. This has all happened since the sarcoid diagnosis. I am worried that the Sarc my be in my neuro system now. So I'm sure I will get to see a whole new bunch of Drs. to evaluate this new problem. It gets old having to explain everything all over to every new Dr. but its worth it. Some times I get a little down and wonder what else could happen but I look over at my kids and I know that I have to get through this for them. Hope this wasn't too long winded and was able to give you a better understanding of me. Oh, by the way, I am a nurse also. I have been on disability just over two years also. I loved my work and I can't wait until I feel well enough to go back. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 >Nice to meet you. I was wondering if you could give me an overview on the remicade. My Dr. is setting up infusions for me and I would like to know what to expect. Any help would be greatly appreciated. Thanks > Hi Tammy, > > I am so sorry you have to deal with this disease. It is a challenge. > > You'll find we have about 370 members or so, and most all of us have > sarcoidosis. I've been living with sarc for 16 yrs. It started in my eyes and lungs. > Now it is systemic--heart, lung, liver, muscles joints, ligaments-- bones-- > brain. > > I've done years on high dose sterioids- and am now on Remicade, Plaquenil and > Methotrexate. The Remicade has been amazing-- I can generally complete > sentences-- a huge improvement, and have been able to get off my oxygen during the > day time. > > The cusp of one of the main valves is calcified due to sarc--so it no longer > shuts properly. I deal with a bit of atrial fibrillation (rapid heart beat) > and so far haven't required a pacemaker or meds. I hope that is years down the > road. > > You'll find a wealth of information here, as well as develop some great > friendships. We have 2 owners and 3 additional moderators. So generally speaking, > we try to get questions and concerns answered daily--but once in a great > while-- we'll all be in flare, so it may be a day or so. > > Welcome to the family, > Tracie > NS Co-owner/moderator > > PS. If you scroll down, you'll find the site address for our LINKS and > ARCHIVES. There is a wealth of info, and you can print out what you need and take > it to your MD's. It sounds as though you've got a good team already--so you > are one step ahead of alot of the gang. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 >Nice to meet you. I was wondering if you could give me an overview on the remicade. My Dr. is setting up infusions for me and I would like to know what to expect. Any help would be greatly appreciated. Thanks > Hi Tammy, > > I am so sorry you have to deal with this disease. It is a challenge. > > You'll find we have about 370 members or so, and most all of us have > sarcoidosis. I've been living with sarc for 16 yrs. It started in my eyes and lungs. > Now it is systemic--heart, lung, liver, muscles joints, ligaments-- bones-- > brain. > > I've done years on high dose sterioids- and am now on Remicade, Plaquenil and > Methotrexate. The Remicade has been amazing-- I can generally complete > sentences-- a huge improvement, and have been able to get off my oxygen during the > day time. > > The cusp of one of the main valves is calcified due to sarc--so it no longer > shuts properly. I deal with a bit of atrial fibrillation (rapid heart beat) > and so far haven't required a pacemaker or meds. I hope that is years down the > road. > > You'll find a wealth of information here, as well as develop some great > friendships. We have 2 owners and 3 additional moderators. So generally speaking, > we try to get questions and concerns answered daily--but once in a great > while-- we'll all be in flare, so it may be a day or so. > > Welcome to the family, > Tracie > NS Co-owner/moderator > > PS. If you scroll down, you'll find the site address for our LINKS and > ARCHIVES. There is a wealth of info, and you can print out what you need and take > it to your MD's. It sounds as though you've got a good team already--so you > are one step ahead of alot of the gang. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 >Nice to meet you. I was wondering if you could give me an overview on the remicade. My Dr. is setting up infusions for me and I would like to know what to expect. Any help would be greatly appreciated. Thanks > Hi Tammy, > > I am so sorry you have to deal with this disease. It is a challenge. > > You'll find we have about 370 members or so, and most all of us have > sarcoidosis. I've been living with sarc for 16 yrs. It started in my eyes and lungs. > Now it is systemic--heart, lung, liver, muscles joints, ligaments-- bones-- > brain. > > I've done years on high dose sterioids- and am now on Remicade, Plaquenil and > Methotrexate. The Remicade has been amazing-- I can generally complete > sentences-- a huge improvement, and have been able to get off my oxygen during the > day time. > > The cusp of one of the main valves is calcified due to sarc--so it no longer > shuts properly. I deal with a bit of atrial fibrillation (rapid heart beat) > and so far haven't required a pacemaker or meds. I hope that is years down the > road. > > You'll find a wealth of information here, as well as develop some great > friendships. We have 2 owners and 3 additional moderators. So generally speaking, > we try to get questions and concerns answered daily--but once in a great > while-- we'll all be in flare, so it may be a day or so. > > Welcome to the family, > Tracie > NS Co-owner/moderator > > PS. If you scroll down, you'll find the site address for our LINKS and > ARCHIVES. There is a wealth of info, and you can print out what you need and take > it to your MD's. It sounds as though you've got a good team already--so you > are one step ahead of alot of the gang. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 >Nice to meet you. I was wondering if you could give me an overview on the remicade. My Dr. is setting up infusions for me and I would like to know what to expect. Any help would be greatly appreciated. Thanks > Hi Tammy, > > I am so sorry you have to deal with this disease. It is a challenge. > > You'll find we have about 370 members or so, and most all of us have > sarcoidosis. I've been living with sarc for 16 yrs. It started in my eyes and lungs. > Now it is systemic--heart, lung, liver, muscles joints, ligaments-- bones-- > brain. > > I've done years on high dose sterioids- and am now on Remicade, Plaquenil and > Methotrexate. The Remicade has been amazing-- I can generally complete > sentences-- a huge improvement, and have been able to get off my oxygen during the > day time. > > The cusp of one of the main valves is calcified due to sarc--so it no longer > shuts properly. I deal with a bit of atrial fibrillation (rapid heart beat) > and so far haven't required a pacemaker or meds. I hope that is years down the > road. > > You'll find a wealth of information here, as well as develop some great > friendships. We have 2 owners and 3 additional moderators. So generally speaking, > we try to get questions and concerns answered daily--but once in a great > while-- we'll all be in flare, so it may be a day or so. > > Welcome to the family, > Tracie > NS Co-owner/moderator > > PS. If you scroll down, you'll find the site address for our LINKS and > ARCHIVES. There is a wealth of info, and you can print out what you need and take > it to your MD's. It sounds as though you've got a good team already--so you > are one step ahead of alot of the gang. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 Hi Tammy My name is Clair and i am fairly new to the group. Im 26 and live in the UK - I have neurosarcoid on my optic nerves and brain stem. This is a great place to ask questions and advise, its also great to have a good moan about dr's, treatment, side effects, stress ect. Where are you baised ? Welcome to the group Clair sarcgirl wrote: Hello, my name is Tammy and i have been diagnosed with Sarcoid for over two years. It started with severe pain and selling in my ankles and pain in my back and chest. It was very painful to take in a breath. CT scan was done showing lymphadenopathy and nodules in my lungs. Diagnosis was confirmed by mediastinoscopy. Since then it has traveled to my heart and recently my Dr. is having me evaluated for neuro sarcoid. I pray every day for remission but until then its one day at a time. It will be nice to be able to share with others. Thanks To help you stay safe and secure online, we've developed the all new Yahoo! Security Centre. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 Hi Tammy My name is Clair and i am fairly new to the group. Im 26 and live in the UK - I have neurosarcoid on my optic nerves and brain stem. This is a great place to ask questions and advise, its also great to have a good moan about dr's, treatment, side effects, stress ect. Where are you baised ? Welcome to the group Clair sarcgirl wrote: Hello, my name is Tammy and i have been diagnosed with Sarcoid for over two years. It started with severe pain and selling in my ankles and pain in my back and chest. It was very painful to take in a breath. CT scan was done showing lymphadenopathy and nodules in my lungs. Diagnosis was confirmed by mediastinoscopy. Since then it has traveled to my heart and recently my Dr. is having me evaluated for neuro sarcoid. I pray every day for remission but until then its one day at a time. It will be nice to be able to share with others. Thanks To help you stay safe and secure online, we've developed the all new Yahoo! Security Centre. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 Hi Tammy My name is Clair and i am fairly new to the group. Im 26 and live in the UK - I have neurosarcoid on my optic nerves and brain stem. This is a great place to ask questions and advise, its also great to have a good moan about dr's, treatment, side effects, stress ect. Where are you baised ? Welcome to the group Clair sarcgirl wrote: Hello, my name is Tammy and i have been diagnosed with Sarcoid for over two years. It started with severe pain and selling in my ankles and pain in my back and chest. It was very painful to take in a breath. CT scan was done showing lymphadenopathy and nodules in my lungs. Diagnosis was confirmed by mediastinoscopy. Since then it has traveled to my heart and recently my Dr. is having me evaluated for neuro sarcoid. I pray every day for remission but until then its one day at a time. It will be nice to be able to share with others. Thanks To help you stay safe and secure online, we've developed the all new Yahoo! Security Centre. 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.