Guest guest Posted July 31, 2003 Report Share Posted July 31, 2003 Hi , Welcome to the group, sorry your wife is sick. This is a very helpful group and are very knowledgable about many aspects of this illness. Its also a good place to come and vent, rant, whine whatever you may need at the moment. I think the party is a great idea and as another member had suggested maybe she should nap before the party so she doesn't tire so easily. Good Luck. If i can ever help in any way let me know. Faith makes all things possible,Love makes it easy.......................Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2003 Report Share Posted October 8, 2003 HI Glenda, Brain sarcoidosis and neurosarcoidosis and central nervous system sarcoidosis are all interchangeable. Many of us have multiple systems in our bodies that are effected by the sarcoidosis. I have biopsy proven sarcoidosis in my lungs and lymph nodes. I have it in my liver, eyes, bloodstream (vasculitis), bones, muscles and ligaments. As well as in my brain. So far, the way it's effecting my brain is by interferring with speech, thought processes like multi-tasking (cooking the spaghetti and the sauce at the same time so that everything is ready at once), or problem solving. I went to vote yesterday, and when I walked out of the polling place, I took a wrong turn, found myself lost on the other side of the building, and had no idea where I was, or where my car was parked. Thank god there was so little on the ballot (74 people to choose from for Governor of California-- and yes, so little to choose from. . .). Anyhow, away from politics. LOL! I also find that I have nasty night sweats, total exhaustion, fatigue, joint and muscle pain and weakness, my fingers and toes are taking on a life of their own--there is no way I could bend them in the direction they're heading; shortness of breath, confusion, short-term memory loss, and so much more. Neuro is the science of how the nerve pathways send the signals to the different parts of the brain, so that our bodies do what they should do. The central nervous system controls the portion of the brain that houses the pituatary (sp) gland, thalmus and hypothalmus-- which regulates things like hormones, heart beat,body temperature, etc. When the brain is effected with granulomas or even in the absence of granulomas- like with vasculitis, the brain and/or blood vessels become inflammed and with granulomas- put pressure on parts of the brain so that the brain can't send the correct signals to the rest of the body. Many of us will never show a granuloma in the brain, but because of damage done by the inflammation, we can't think or function like we used to do. This is a website that explains the brain and neurological disorders - http://www.ninds.nih.gov/ Hope this helps, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2003 Report Share Posted October 8, 2003 Hi Glenda, Welcome to the group... I'm glad you've found us but sorry that you've had to... My name is and I have Neurosarcoidosis, but this term means sarcoidosis of the Central Nervous System, which can be of the Brain or the Spinal Cord...this is the from I have.. of the spinal cord.. which leaves me with the inability to stand but for a few min, then comes tremors and then comes the fall if I don't get to a sitting place before the crash... We all complain of different areas of the body because lots of us have had sarc for a long time and in many cases the disease has spread to other parts of our bodies causing pain in other places, which the term for that is systemic sarcoidosis..causing arthrithic pain or even sometimes worse, I also have sarcoid in my lungs, Lacrimal glands, sinuses, salivary glands, and my Right knee.. this is systemic with this many areas affected... I hope I've answered your question... And once again welcome to the group... Big Hugs, -- New to Group I'm new to this group and have been reading different emails re neurosarcoidosis. I was dx June 2002 after l 1/2 years of symptoms (biopsy). My brain is the only part of my body effected with granulomas. I am confused with the term neurosarc. Apparently it is not in the brain only but includes the body. Can anyone help me to understand the difference. Would like to hear from brain sarc people also. Thanks, Glenda~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2003 Report Share Posted October 9, 2003 Glenda, You will probably get more on this from other¡Çs but Neuro, means the neurological system which stems from the brain. The brain is the ¡Èmotor¡É for our neuro system, the spine is the transport system, and it continues to branch out form there. Does that make sense? So ¡Èbrain¡É sarc is Neruo Sarc. I have left side pain, paralysis, etc. and it all stems form my brain, even though the pain may be in my foot. I hope this is helpful, maybe some one else will explain it better. But be sure to ask any and all questions you have. Love and Prayers to you and all, Marla New to Group I'm new to this group and have been reading different emails re neurosarcoidosis. I was dx June 2002 after l 1/2 years of symptoms (biopsy). My brain is the only part of my body effected with granulomas. I am confused with the term neurosarc. Apparently it is not in the brain only but includes the body. Can anyone help me to understand the difference. Would like to hear from brain sarc people also. Thanks, Glenda ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives and Digest Attachment Pictures:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:- Add a website URL you have found useful. http://groups.yahoo.com/group/Neurosarcoidosis/links Personal Complaints or problems:- Please email the moderators mailto:Neurosarcoidosis-owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/join To subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you! ~~~~ *** ~~~ *** ~~~ *** ~~~~ Come stand by my side where I am going, Take my hand if I should stumble and fall, It's the strength and love that you share, That gives me what I need most of all. - Hoyt Axton ~~~~ *** ~~~ *** ~~~ *** ~~~~ Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2003 Report Share Posted October 9, 2003 Hi, Glenda. Welcome to the group! I see several people have already responded to your letter, but I'll put my 2 cents in anyway. Neurosarc is any neurologic involvement; that can include the brain itself, the 12 cranial nerves (for hearing, smell, etc.), the spinal column, and peripheral nerves (out in the body). I have small nerve fiber neuropathy, which causes numbness & burning in my feet, and recently on the outside of my right thigh. I also have bilateral hearing loss (8th cranial nerves), have had 2 facial palsies (7th cranial nerve), and trigeminal pain (5th nerve). I have memory loss, tremors, swallowing problems & probably other stuff that I can't remember right now! So, neurosarcoidosis covers a wide range of symptoms, which is one reason it is difficult to diagnose. Good luck! Rose from Indiana New to Group I'm new to this group and have been reading different emails re neurosarcoidosis. I was dx June 2002 after l 1/2 years of symptoms (biopsy). My brain is the only part of my body effected with granulomas. I am confused with the term neurosarc. Apparently it is not in the brain only but includes the body. Can anyone help me to understand the difference. Would like to hear from brain sarc people also. Thanks, Glenda~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2003 Report Share Posted October 9, 2003 Hi , I cann't believe your description about standing or the lack of the ability to stand. This is me to a tee. My neuro believes it is because of migranes? Who dx you? My MRI doesn't show anything except a lump in the right front lobe of my brain but it is so small that they don't give a damn. My right knee is extremely bad. Bone is rubbing on bone as apparently my cartilage is worn away. I see an orthopedic rehab doctor at the end of the month and my GP said than maybe he can give me a brace for support and to be able to walk. How do you get around? I had to retire early (54) but it was the best thing I could have done for myself. Besides cooking for my son's wedding, I have organized my closets and kitchen cupboards and now hope to start painting again. Thank you for sharing it makes such a difference to hear that others have the same symptoms. Guess I'm not so weird afterall! Love Joanne in Toronto wrote: Hi Glenda, Welcome to the group... I'm glad you've found us but sorry that you've had to... My name is and I have Neurosarcoidosis, but this term means sarcoidosis of the Central Nervous System, which can be of the Brain or the Spinal Cord...this is the from I have.. of the spinal cord.. which leaves me with the inability to stand but for a few min, then comes tremors and then comes the fall if I don't get to a sitting place before the crash... We all complain of different areas of the body because lots of us have had sarc for a long time and in many cases the disease has spread to other parts of our bodies causing pain in other places, which the term for that is systemic sarcoidosis..causing arthrithic pain or even sometimes worse, I also have sarcoid in my lungs, Lacrimal glands, sinuses, salivary glands, and my Right knee.. this is systemic with this many areas affected... I hope I've answered your question... And once again welcome to the group... Big Hugs, -- New to Group I'm new to this group and have been reading different emails re neurosarcoidosis. I was dx June 2002 after l 1/2 years of symptoms (biopsy). My brain is the only part of my body effected with granulomas. I am confused with the term neurosarc. Apparently it is not in the brain only but includes the body. Can anyone help me to understand the difference. Would like to hear from brain sarc people also. Thanks, Glenda~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2003 Report Share Posted October 9, 2003 Hi Joanna, seems like my sarcoid affects the spinal cord and not the brain... according to my Neuro/Immunologist...He just watched me walk and with the history of lung and lymph node sardcoid.. he knew exactly what it was.. also my ace level got up to 200 along with my sed rate up to 90 and my crp which is suppose to be below 5 mine was 38... I had to demand a gallium scan which is where they inject a radioactive dye and you go back 3 days in a row to see if the dye reacts anywhere showing inflammation and of course it did.. I can't do much these days at all, I had the bright Idea of going to the grocery store last week by myself.. and nearly colapsed twice before I could get to the car... I had to have help and a dear man that I've known all my life helped me with my groceries, and got me out to the car... Ususally my son does the groceries but he had company coming and we had noting to eat, what we will try for our kids... but it won't happen again...I use a quad cane, and if I have to go the the doctor's office I have a scooter that I ride which has been my lifesaver and has made me semimobile.. otherwise I would be totally homebound.... Its good to hear from you Joanne from Toronto..Welcome back... Hugs, -- New to Group I'm new to this group and have been reading different emails re neurosarcoidosis. I was dx June 2002 after l 1/2 years of symptoms (biopsy). My brain is the only part of my body effected with granulomas. I am confused with the term neurosarc. Apparently it is not in the brain only but includes the body. Can anyone help me to understand the difference. Would like to hear from brain sarc people also. Thanks, Glenda~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2003 Report Share Posted October 12, 2003 % New to Group I'm new to this group and have been reading different emails re neurosarcoidosis. I was dx June 2002 after l 1/2 years of symptoms (biopsy). My brain is the only part of my body effected with granulomas. I am confused with the term neurosarc. Apparently it is not in the brain only but includes the body. Can anyone help me to understand the difference. Would like to hear from brain sarc people also. Thanks, Glenda~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2003 Report Share Posted October 13, 2003 Glenda, I was told I have NeuroSarc. I was told I probably have a lesion in the brainstem where the nerves cross over. I had an inconclusive MRI, my doc said “it could be to small to see, but the symptoms told him where the lesion is, or so he thinks. I have had many strange symptoms. I have left side Neuropathic pain, my left foot the outside and the little toe burn most of the time, which sends these burning type pain up the leg. I have some of the same pain in the left hip. The left side of my face remains numb all the time, but I get the trigieniaml pain from time to time. I have transient paralysis on that side. I started 9 years ago in my lungs, pred. remission. Next episode worse, pred. remission. Next worse, pred didn’t work so hot, and made me crazy, each time I’ve had to take it the side effects and the psychosis get worse, not I have a love/hate relationship with the drug. I am on 1 mg/daily, and only have a week left and I’m off. I have been weaning off the pred. 1mg/month for some time now. Each episode got worse! I now have pulmonary and systemic/skin involvement taking plaquanil for that. Now with the neurosarc, I am on. Methotrexare, plaquanil, neurontin, nortriptyline, ativan and effexor, and vicodin for the pain, which barely touches it, but takes the edge off. I tried duragisic patch, got N & V x 10 hours. Saw a pain clinic doc, suggested a nerve block, but that has a 50/50 chance since this is neuropathic. Just quit nusing after 27 years, to see if the stress of that will help this monster to settle down?? (I loved my job, and feel a little empty inside). Oh ya I’m getting Sarc in my joints, my “get this” my Right little finger, and now my left middle finger. Skin lesions everywhere!!! I am on the computer now because my arm started burning from the lesions, and had to get up and rub lotion all over my arm. ( I did however, find a great lotion, that helps with the burning sensation of the lesions) it is, of course, Kay visibly fit body lotion, which is suppose to be awesome for things like stretch marks, spider veins, helps break down adipose (fat) tissue. I have seen it do all those things, and found out in desperation that it also works on my sarc lesions. So I started plum, went to systemic, skin, neuro. I had trouble with my ears like I was in a tunnel and that came and went, drove me crazy. I would get lost, especially while driving, and sometimes just coming out of a patient’s room, I would forget where the nurse’s station was? Scary! I had what I called brain fog. The mextho helped my brain fog and the hearing thing a lot. But seem to have chronic pain now, every day my left foot hurts, and sometimes the left thigh too. Ok enough, now you know the “whole story”. Glenda I’m curious, did you ever work in a hospital? I’m glad you are doing ok on the prednisone, I can’t take anything over 20mgs/day anymore and even that is pushing it. Would love to hear from you, sorry to rattle on about me, but I guess I’m feeling a little empty tonight, have since I quit the hospital on Thursday, Rose knows what I mean, don’t ya girlfriend? Anyway, that’s enough to put you to sleep, which is probably why I’m up!! Love and Prayers to all, Marla Re: New to Group % New to Group I'm new to this group and have been reading different emails re neurosarcoidosis. I was dx June 2002 after l 1/2 years of symptoms (biopsy). My brain is the only part of my body effected with granulomas. I am confused with the term neurosarc. Apparently it is not in the brain only but includes the body. Can anyone help me to understand the difference. Would like to hear from brain sarc people also. Thanks, Glenda ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives and Digest Attachment Pictures:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:- Add a website URL you have found useful. http://groups.yahoo.com/group/Neurosarcoidosis/links Personal Complaints or problems:- Please email the moderators mailto:Neurosarcoidosis-owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/join To subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you! ~~~~ *** ~~~ *** ~~~ *** ~~~~ Come stand by my side where I am going, Take my hand if I should stumble and fall, It's the strength and love that you share, That gives me what I need most of all. - Hoyt Axton ~~~~ *** ~~~ *** ~~~ *** ~~~~ Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives and Digest Attachment Pictures:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:- Add a website URL you have found useful. http://groups.yahoo.com/group/Neurosarcoidosis/links Personal Complaints or problems:- Please email the moderators mailto:Neurosarcoidosis-owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/join To subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you! ~~~~ *** ~~~ *** ~~~ *** ~~~~ Come stand by my side where I am going, Take my hand if I should stumble and fall, It's the strength and love that you share, That gives me what I need most of all. - Hoyt Axton ~~~~ *** ~~~ *** ~~~ *** ~~~~ Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives and Digest Attachment Pictures:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:- Add a website URL you have found useful. http://groups.yahoo.com/group/Neurosarcoidosis/links Personal Complaints or problems:- Please email the moderators mailto:Neurosarcoidosis-owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/join To subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you! ~~~~ *** ~~~ *** ~~~ *** ~~~~ Come stand by my side where I am going, Take my hand if I should stumble and fall, It's the strength and love that you share, That gives me what I need most of all. - Hoyt Axton ~~~~ *** ~~~ *** ~~~ *** ~~~~ Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 Hi Glenda,My name is . I am a brain sarc only person also. I had a skull base lesion 2 years ago that recently returned. I am currently on 17 1/2 mg of prednisone. I suffered with double vision as my initial diag. - New to Group I'm new to this group and have been reading different emails re neurosarcoidosis. I was dx June 2002 after l 1/2 years of symptoms (biopsy). My brain is the only part of my body effected with granulomas. I am confused with the term neurosarc. Apparently it is not in the brain only but includes the body. Can anyone help me to understand the difference. Would like to hear from brain sarc people also. Thanks, Glenda~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 Hi Glenda welcome to our loving family. I also have sarc in the brain I have29yrs of sarc and 9yrs of neurosarc.In my 38yrs with the sarc monster I have had aseptic meningitis -2 strokes-6 and countless grand mal seizures deaf in my left ear and blind in my right eye and right now I am getting over a bad case of anterior uveitis . So since I can see again I will be posting more Quint Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 Hi Glenda, I too am a brain sarc person,,,and it started in my body,,,I was first dx'd in 1989. I am sorry to hear that you have it,,,but glad that you have found this group, there are some really great ppl here. Lynne > Hi Glenda, > > My name is . I am a brain sarc only person also. I had a skull base lesion 2 years ago that recently returned. I am currently on 17 1/2 mg of prednisone. I suffered with double vision as my initial diag. > > > > - New to Group > > > I'm new to this group and have been reading different emails re neurosarcoidosis. I was dx June 2002 after l 1/2 years of symptoms (biopsy). My brain is the only part of my body effected with granulomas. I am confused with the term neurosarc. Apparently it is not in the brain only but includes the body. Can anyone help me to understand the difference. Would like to hear from brain sarc people also. Thanks, Glenda > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://www.elderwyn.com/neurosarcoidosis/chat.php > > Message Archives and Digest Attachment Pictures:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Bookmarks:- > Add a website URL you have found useful. > http://groups.yahoo.com/group/Neurosarcoidosis/links > > Personal Complaints or problems:- > Please email the moderators > mailto:Neurosarcoidosis-owner > > Subscription Details:- > 1) Individual email - means that every email sent to the list you receive. > 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. > To modify your subscription settings please visit:- > http://groups.yahoo.com/group/Neurosarcoidosis/join > > To subscribe email neurosarcoidosis-subscribe > To unsubscribe email neurosarcoidosis-unsubscribe > > The moderators will not be doing it for you! > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > Come stand by my side where I am going, > Take my hand if I should stumble and fall, > It's the strength and love that you share, > That gives me what I need most of all. > - Hoyt Axton > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2003 Report Share Posted October 16, 2003 Missed you, Quint. I always enjoy your posts. Rose Re: New to Group > Hi Glenda welcome to our loving family. I also have sarc in > the brain I have29yrs of sarc and 9yrs of neurosarc.In my > 38yrs with the sarc monster I have had aseptic meningitis -2 > strokes-6 and countless grand mal seizures deaf in my left > ear and blind in my right eye and right now I am getting > over a bad case of anterior uveitis . So since I can see > again I will be posting more > Quint > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://www.elderwyn.com/neurosarcoidosis/chat.php > > Message Archives and Digest Attachment Pictures:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Bookmarks:- > Add a website URL you have found useful. > http://groups.yahoo.com/group/Neurosarcoidosis/links > > Personal Complaints or problems:- > Please email the moderators > mailto:Neurosarcoidosis-owner > > Subscription Details:- > 1) Individual email - means that every email sent to the list you receive. > 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. > To modify your subscription settings please visit:- > http://groups.yahoo.com/group/Neurosarcoidosis/join > > To subscribe email neurosarcoidosis-subscribe > To unsubscribe email neurosarcoidosis-unsubscribe > > The moderators will not be doing it for you! > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > Come stand by my side where I am going, > Take my hand if I should stumble and fall, > It's the strength and love that you share, > That gives me what I need most of all. > - Hoyt Axton > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2003 Report Share Posted October 16, 2003 Missed you, Quint. I always enjoy your posts. Rose Re: New to Group > Hi Glenda welcome to our loving family. I also have sarc in > the brain I have29yrs of sarc and 9yrs of neurosarc.In my > 38yrs with the sarc monster I have had aseptic meningitis -2 > strokes-6 and countless grand mal seizures deaf in my left > ear and blind in my right eye and right now I am getting > over a bad case of anterior uveitis . So since I can see > again I will be posting more > Quint > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://www.elderwyn.com/neurosarcoidosis/chat.php > > Message Archives and Digest Attachment Pictures:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Bookmarks:- > Add a website URL you have found useful. > http://groups.yahoo.com/group/Neurosarcoidosis/links > > Personal Complaints or problems:- > Please email the moderators > mailto:Neurosarcoidosis-owner > > Subscription Details:- > 1) Individual email - means that every email sent to the list you receive. > 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. > To modify your subscription settings please visit:- > http://groups.yahoo.com/group/Neurosarcoidosis/join > > To subscribe email neurosarcoidosis-subscribe > To unsubscribe email neurosarcoidosis-unsubscribe > > The moderators will not be doing it for you! > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > Come stand by my side where I am going, > Take my hand if I should stumble and fall, > It's the strength and love that you share, > That gives me what I need most of all. > - Hoyt Axton > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2003 Report Share Posted October 18, 2003 Hi Glenda, >>My neuro says that it can spread from the body to the brain but isn't likely to go from brain to body. Firstly your neuro is wrong it can go from the Brain to the Body - Rare yes - but it can happen. You can also just have " Pure Neurosarc " without any other organ involvement at all. Secondly, Welcome! Here there are many people with many different types of sarc, and we will all do our best to answer any questions you have, but I want to stress the point, that you are not alone in your battle. We are here for you. Vent anytime you need. About anypart of being sick. It's hard to live with, and I guess we know alot about each other lol. Please know no post is ever too long or too short, and we are always here to support you. I'm sorry you're sick, but I hope being able to lean on us helps you through the tough times. Love isha -- Re: New to Group % ----- Original Message ----- Thank you, Rose and , for responding to my e mail. You, Rose, are the only person I know of who has brain sarc. My neuro says that it can spread from the body to the brain but isn't likely to go from brain to body. Has that been your experience? Let me share my story. My symptoms came on all of a sudden spring 2001. I was painting a room and became dizzy while upon a ladder. Then I had LOUD noise in my ear similiar to the ocean surf and eventually it became so loud just like a hair blow dryer constantly going in my ear. The consistently odd thing about my symptoms were they were cyclically consistent. I would have problems with my right ear and then it would move to my left while my right ear cleared up. I had balance problems, some visual, each symptom lasting approx one month and then on to something else strange and odd. My neuro did not want me to have a biopsy at that time because I was healthy otherwise and because of the location no dr wanted to do it. The risks far outweighed the benefits. 50 or 60% of the time brain biospies are inconclusive. So we waited with MRI's every 3 mos. Eventually I started getting headaches and the inflamation in my brain increased and spread to a place where it would be easy to biospy. Dx was neurosarcoidosis and I started 60 mg. of prednisone. I know lots of people have problems with pred. but I loved it. First of all my symptoms dissapeared except for the total hearing loss in my left ear, right ear is excellent. I slowly tapered off for nine mos. At 6 mos. (down to 20 mg) I felt some symptoms, the odd ones where I'm " off " , had an MRI which showed it was almost all gone so continued tapering pred. Sometimes my symptoms don't coincide with my MRI's. I'll be feeling pretty much symptom free and my MRI's show increased change and I can feel, know something is not right and my MRI's are clearing up. Go figure. In March of this year my MRI's showed increase so my neuro raised my pred to 20 mg, the amount I was on in Dec. when my MRI showed marked improvement, almost gone. I had weaned myself to 2 1/2 mg. every other day, felt great so was surprised with the test results. I'm now on 20 mg again and have had no change in the next 2 MRI's but last one in Sept. showed the same size only more has shifted to the left dura part and less on the right. There was some talk of changing meds, some chemo drug or anti rejection drug but decided to stay on pred and give it some more time to work. I am having side effects from pred now but am not always sure what is pred related and what is sarc related. So that's my story. Would love to hear from more brain sarc people. I understand we are rare. Glenda from Oregon Quote Link to comment Share on other sites More sharing options...
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