Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Words of Wisdom!!! I was very much intimidated by the medical staff and their "limited" knowlege of the disease, I finally took it upon myself to "research" furthur. Thanks to "this" group of family members, I've learned so much. All love and support is so appreciated and I thank ya'all!! God Bless! Subject: Just a reminderTo: neurosarcoidosis Date: Tuesday, January 26, 2010, 3:40 AM To all the members --- just a reminder that you ALL may answer any question received on the list. Some of you may not know that, but that is the way we learn more about this disease. The more answers you get, the more you learn and the more you can research. Not ALL drugs work on ALL people, what works for me might not work for you, so we all need the info and can check it out on our own time. For example, Tracie is doing really well with the Remicade, ..... but I had a really BAD experience with it and a couple of other Moderators did too. So, when a question is posted, please, everyone, give your thoughts on it. You never know when your answer will be the one that helps. We may not all be medical minded, but we all have experience with this old Sarc Monster and sometimes I think we know more about it than most Doctors.... sad, but true.......the GOOD Sarc Doctor seems to be hard to find. Lots of hugs to all, DarleneNS Co-Owner/Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2010 Report Share Posted January 27, 2010  Thanks, June! We do have a great list.........maybe that is why we have so many members and just keep growing.... Hugs, Just a reminderTo: neurosarcoidosis Date: Tuesday, January 26, 2010, 3:40 AM To all the members --- just a reminder that you ALL may answer any question received on the list. Some of you may not know that, but that is the way we learn more about this disease. The more answers you get, the more you learn and the more you can research. Not ALL drugs work on ALL people, what works for me might not work for you, so we all need the info and can check it out on our own time. For example, Tracie is doing really well with the Remicade, ..... but I had a really BAD experience with it and a couple of other Moderators did too. So, when a question is posted, please, everyone, give your thoughts on it. You never know when your answer will be the one that helps. We may not all be medical minded, but we all have experience with this old Sarc Monster and sometimes I think we know more about it than most Doctors.... sad, but true.......the GOOD Sarc Doctor seems to be hard to find. Lots of hugs to all, DarleneNS Co-Owner/Moderator Quote Link to comment Share on other sites More sharing options...
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