Guest guest Posted November 13, 2000 Report Share Posted November 13, 2000 Hello , welcome. I'm Michele, I live in MD, just diagnosed this summer. I have a 12 year old and a 3 year old, but I don't homeschool and a big kudos to you that you do! It's hard work. New to this group Hi, I'm new to this e-group. Glad I found you. I'm 36 and was diagnosed several years ago. Pain and lack of true sleep are my worst enemies. I hate taking medication, but do. Now I'm taking Trazadone for sleep, which seems to be working for now... Also I take Clonapin (anti-sezuire med.) which helps the pain. I'm a mom of an 8 year old girl and we homeschool, so I'm very busy. F. eGroups Sponsor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2003 Report Share Posted July 23, 2003 I was diagnosed with sacoid 10 years ago in March. They tell me now I have developed neuro sarciod. I have had an mri of my brain, a spinal tap,an emg, and am scheduled for an mri of my spine, and some nerve conductivity test of my brain. My neurologist said it is like an emg only from my brain to my hands and feet and not just in my arms and legs.My doctors are talking about trying some new meds. becuse I don't seem to be responding to prednisone any more.Is there anyone in this group that takes any of these other meds who can tell me about side affects. Because in 10 years time I have seen all the negatives of prednisone, and it was bad enough.I found an article on neuro sarcoid, it wasn't very encouraging. regular sarcoid is bad enough, with the muscle ackes and weakness,and trouble breathing, and on and on.The doctors haven't shared much with me yet. My pulmonoligist said we would discuss it in more detail after all the tests are back,but from what I have found on my own I'm not ashamed to say I am more than alittle scared.I'm sorry if it seems like I just unloaded and didn't bother to introduce my self or anything but just the idea that there is a group for this is a relief,I never even looked for one for regular sarcoid.Well thanks for the opportunity to vent a little. I would appreciate any responses, and advice, this new stage of my disease is alittle more scary than when I was first diagnosed, partially because in the beginning I was so sick,it was a relief almost just to have a name for what they had looked for,for so long. Well anyway thank you. jeff Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2003 Report Share Posted July 23, 2003 Welcome Jeff, If I had words of encouragement I would share them! All I can say is this group is a boat load of love and support- a tad looney at times- but a wonderful life line. Welcome aboard and sorry you have to be here. Bobbie Quote Link to comment Share on other sites More sharing options...
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