Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 Hi Clair, You have come to a good place. There are many here with different types of sarcoid and neurosarcoidosis. There is plenty of us in the group who are in different stages of this horrible disease. You can ask questions , rant , rave, etc. to make you feel better. There is a lot of information flowing through this group too. Both personal and through the links on the front page . I've heard since we have a couple of people overseas that treatment over there isn't as aggressive and modern as over here. You are welcome to browse our links and archives which have a lot of hidden info as well. The technical questions I feel more comfortable with Tracie talking to you . She is part owner of the group. She isn't feeling too well right now, but when she is doing better she will be back on and maybe you two can hook up and discuss your issues with her then.Welcome to our group. We are glad to have you.......Hugs, Debbieclair morgan wrote: Hi All I have has neurosarcoidosis for about 4 years although I was only dignosed just over a year ago. I know that I have it on my optic nerves and brain stem and take a multitude of drugs to supress my immune system the main one prednisolone, unfortunalty it doesnt like me and I have had possibly has every side effect reported and a whole host that haven't. My problem is im in the UK where sarcoid let alone neurosarcoid is something doctors only read about in text ! Therefore the information I have gained is very limited and I have never heard of anyone else let alone met them ! If anyone can please provide some half decent information to the disease and treatments I would be very grateful and if there is anyone else in the UK please get in touch. Thanks to you All Clair Win a BlackBerry device from O2 with Yahoo!. Enter now. Yahoo! Mail Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 Hi Clair, You have come to a good place. There are many here with different types of sarcoid and neurosarcoidosis. There is plenty of us in the group who are in different stages of this horrible disease. You can ask questions , rant , rave, etc. to make you feel better. There is a lot of information flowing through this group too. Both personal and through the links on the front page . I've heard since we have a couple of people overseas that treatment over there isn't as aggressive and modern as over here. You are welcome to browse our links and archives which have a lot of hidden info as well. The technical questions I feel more comfortable with Tracie talking to you . She is part owner of the group. She isn't feeling too well right now, but when she is doing better she will be back on and maybe you two can hook up and discuss your issues with her then.Welcome to our group. We are glad to have you.......Hugs, Debbieclair morgan wrote: Hi All I have has neurosarcoidosis for about 4 years although I was only dignosed just over a year ago. I know that I have it on my optic nerves and brain stem and take a multitude of drugs to supress my immune system the main one prednisolone, unfortunalty it doesnt like me and I have had possibly has every side effect reported and a whole host that haven't. My problem is im in the UK where sarcoid let alone neurosarcoid is something doctors only read about in text ! Therefore the information I have gained is very limited and I have never heard of anyone else let alone met them ! If anyone can please provide some half decent information to the disease and treatments I would be very grateful and if there is anyone else in the UK please get in touch. Thanks to you All Clair Win a BlackBerry device from O2 with Yahoo!. Enter now. Yahoo! Mail Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 Hi Clair, You have come to a good place. There are many here with different types of sarcoid and neurosarcoidosis. There is plenty of us in the group who are in different stages of this horrible disease. You can ask questions , rant , rave, etc. to make you feel better. There is a lot of information flowing through this group too. Both personal and through the links on the front page . I've heard since we have a couple of people overseas that treatment over there isn't as aggressive and modern as over here. You are welcome to browse our links and archives which have a lot of hidden info as well. The technical questions I feel more comfortable with Tracie talking to you . She is part owner of the group. She isn't feeling too well right now, but when she is doing better she will be back on and maybe you two can hook up and discuss your issues with her then.Welcome to our group. We are glad to have you.......Hugs, Debbieclair morgan wrote: Hi All I have has neurosarcoidosis for about 4 years although I was only dignosed just over a year ago. I know that I have it on my optic nerves and brain stem and take a multitude of drugs to supress my immune system the main one prednisolone, unfortunalty it doesnt like me and I have had possibly has every side effect reported and a whole host that haven't. My problem is im in the UK where sarcoid let alone neurosarcoid is something doctors only read about in text ! Therefore the information I have gained is very limited and I have never heard of anyone else let alone met them ! If anyone can please provide some half decent information to the disease and treatments I would be very grateful and if there is anyone else in the UK please get in touch. Thanks to you All Clair Win a BlackBerry device from O2 with Yahoo!. Enter now. Yahoo! Mail Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 Hello Claire. Nice to meet you. I have brain & CNS sarc and I am getting close to my the end of my first year of Cytoxan IV therapy for it. I also take pred & have gained a ton of weight, Elvis Presley sideburns that need to be removed with a facial hair removing cream & mood swings that have people hide from me sometimes. Sorry I'm not closer but I'm in Kentucky in the midwest of America. They are trying to taper off the pred but that seems to give me more problems walking. I've only heard the word neurosarcoidosis for about a year & don't have much info but there are plenty here that do. Hang in there. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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