Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 You might want to ask both the neuro and Dr. Baughman which of the other docs they'd recommend. They'll have insight into who would be most effective and caring in treating you. Take care, Tracie Subject: Re: Do I belong?To: Neurosarcoidosis@ yahoogroups. comDate: Thursday, April 16, 2009, 3:07 PM , Of course you belong here! You are most welcome here and as you probably know, we all have a lot of the same symptoms, yet some of us don't have certain ones and others do --- and they may not have the symptoms we do. Sarcoidosis and Neurosarcoidosis both are very strange diseases with many different ways they attack a body. Just like the medicines we take. What helps you might not help the next person and what helps me might not help you. That is what makes it such a frustrating disease. We have lots of links and lots of files here and everyone is welcome to view them and study them. You are welcome to stay part of our family and help others as we do. Each of us have our little strange quirks with this disease so do not feel that you do not belong. Sending lots of hugs, Darlene NS Co-Owner/Moderator Do I belong? I haven't posted in months. This is because I am not sure if I belong to this group. I have many of the symptoms of NS. One neurologist I saw in 2006 decided even though they couldn't biopsy, he thought it likely. My current neurologist says my disease is autoimmune caused. My immune system is attacking the myelin sheath of 7 cranial nerves. What I have they have never seen before, but it is responding to Remicade. I am on several drugs, all the same as many of you are on - Remicade, Imuran, Prednisone. I have been sick for 9 years.So I've decided to let you all decide. I have no support group since I have a weird diagnosis, not a recognizable condition. NS is the most similar condition to what I have. Let me know what you think. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2009 Report Share Posted April 17, 2009 , amen to the other comments. I remember from your earlier postings that you have another rare disorder--the CIDP--but I don't remember what it is. Or have they now decided that all the symptoms might be from NS? Whatever, you are certainly welcome! Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: wendy_cidp@...Date: Thu, 16 Apr 2009 17:47:16 +0000Subject: Do I belong? I haven't posted in months. This is because I am not sure if I belong to this group. I have many of the symptoms of NS. One neurologist I saw in 2006 decided even though they couldn't biopsy, he thought it likely. My current neurologist says my disease is autoimmune caused. My immune system is attacking the myelin sheath of 7 cranial nerves. What I have they have never seen before, but it is responding to Remicade. I am on several drugs, all the same as many of you are on - Remicade, Imuran, Prednisone. I have been sick for 9 years.So I've decided to let you all decide. I have no support group since I have a weird diagnosis, not a recognizable condition. NS is the most similar condition to what I have. Let me know what you think. Windows Live™: Keep your life in sync. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2009 Report Share Posted April 18, 2009 Hi , Welcome, I think you fit in here from what you say. What are your symptoms? I too am on Remicade, Plaquanil, etc... I find the Remicade helps me a lot. I am glad it's helping you too! This is a group of wonderful, knowledgeable, warm friends, and we are here to help each other. So please feel welcomed, and ask any questions you might have, we'd love to help you. Marla I haven't posted in months. This is because I am not sure if I belong to this group. I have many of the symptoms of NS. One neurologist I saw in 2006 decided even though they couldn't biopsy, he thought it likely. My current neurologist says my disease is autoimmune caused. My immune system is attacking the myelin sheath of 7 cranial nerves. What I have they have never seen before, but it is responding to Remicade. I am on several drugs, all the same as many of you are on - Remicade, Imuran, Prednisone. I have been sick for 9 years. So I've decided to let you all decide. I have no support group since I have a weird diagnosis, not a recognizable condition. NS is the most similar condition to what I have. Let me know what you think. Quote Link to comment Share on other sites More sharing options...
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