Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 Hi , Thanks for writing. I am glad you found us but sorry that you have Sarcoidosis. I am going to forward your email to our list and ask for help in finding a surgeon near you. I hope that is ok with you. Please allow a couple of days or so for someone to answer as we are all very sick..........but we have a good group (nearly 500 members) and many are willing to help and share info. We also have very good info in our files section.........please feel free to browse through those and also past messages. You can use Search on the archived messages and find lots of info there. As for the Prednisone, yes, usually the Doctors try the Pred first..........sometimes it works well and a person will go into remission..........other times it does not seem to help and when you have to be on it again, it just seems to cause the Sarcoidosis to break out in another area.........but each person is different. I was diagnosed in 1996, I believe. I had it in my lungs first and by the time I was diagnosed (after 3 years of doctors), it had already damaged my lungs. Now, it is spread to other places in my body. I am taking Imuran........been on it for 4 years now, I think, It has helped a lot but I still have flareups as most people do. As for the Marshall Protocol, we do NOT recommend it. We have found it not to be factual and it is very misleading. There is lots of info around on this. Please be careful in this area. We have people from all over the world here; people from all walks of life; several people with medical backgrounds; etc. Please feel free to ask any and all questions but remember..........give them time to answer.........we are all sick. Again, welcome to our list. Tracie and myself are co-owners of this list and we have Debbie, Rose, Theresa, and Kim as moderators. Kim has been very ill and is not active on the list right now -- as is Rose. Theresa and Debbie are around as much as they can be and Tracie is presently on a little vacation but will be back sometime this weekend. I am here as much as possible. Usually in the early morning and the evening, but I pop in during the day when I can. Hope this helps a little and we are looking forward to getting to know you better. Hugs, Darlene NS Co-Owner/Moderator Neurosarc specialist? Hi Darlene, my name is . I live in Norman, OK. I've just been diagnosed with Sarcoidosis. I've got in in my spinal canal, from T2 to T9. I've also got in in my chest lymph nodes. I'm hoping to find a specialist soon. My neurologist has prescribed what seems to be standard: 60mg Pred + Imuran(can't remember the dosage). I'll start that next week after I heal from having my wisdom teeth out. However, I've just started reading about the Marshall Protocol, and it seems interesting. If there is any advice you have regarding specialists/treatment, I'd love to hear it. Thank you so much and God Bless! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 Hi , Thanks for writing. I am glad you found us but sorry that you have Sarcoidosis. I am going to forward your email to our list and ask for help in finding a surgeon near you. I hope that is ok with you. Please allow a couple of days or so for someone to answer as we are all very sick..........but we have a good group (nearly 500 members) and many are willing to help and share info. We also have very good info in our files section.........please feel free to browse through those and also past messages. You can use Search on the archived messages and find lots of info there. As for the Prednisone, yes, usually the Doctors try the Pred first..........sometimes it works well and a person will go into remission..........other times it does not seem to help and when you have to be on it again, it just seems to cause the Sarcoidosis to break out in another area.........but each person is different. I was diagnosed in 1996, I believe. I had it in my lungs first and by the time I was diagnosed (after 3 years of doctors), it had already damaged my lungs. Now, it is spread to other places in my body. I am taking Imuran........been on it for 4 years now, I think, It has helped a lot but I still have flareups as most people do. As for the Marshall Protocol, we do NOT recommend it. We have found it not to be factual and it is very misleading. There is lots of info around on this. Please be careful in this area. We have people from all over the world here; people from all walks of life; several people with medical backgrounds; etc. Please feel free to ask any and all questions but remember..........give them time to answer.........we are all sick. Again, welcome to our list. Tracie and myself are co-owners of this list and we have Debbie, Rose, Theresa, and Kim as moderators. Kim has been very ill and is not active on the list right now -- as is Rose. Theresa and Debbie are around as much as they can be and Tracie is presently on a little vacation but will be back sometime this weekend. I am here as much as possible. Usually in the early morning and the evening, but I pop in during the day when I can. Hope this helps a little and we are looking forward to getting to know you better. Hugs, Darlene NS Co-Owner/Moderator Neurosarc specialist? Hi Darlene, my name is . I live in Norman, OK. I've just been diagnosed with Sarcoidosis. I've got in in my spinal canal, from T2 to T9. I've also got in in my chest lymph nodes. I'm hoping to find a specialist soon. My neurologist has prescribed what seems to be standard: 60mg Pred + Imuran(can't remember the dosage). I'll start that next week after I heal from having my wisdom teeth out. However, I've just started reading about the Marshall Protocol, and it seems interesting. If there is any advice you have regarding specialists/treatment, I'd love to hear it. Thank you so much and God Bless! Quote Link to comment Share on other sites More sharing options...
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