Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 , It sounds like you have Neurosarcoidosis, the meds are the same as for NS, if it smells like it and taste like it it must be it.. Now as for me since 1990 I have been misdiagnose with Hep B and C. It was not until May of 08 when they finally did CT and MRI scans that the found I had NS. They also Biospyed a Lmyhp node and found it. basically what have is NS or something so similar as not to matter. As far as I am concern you belong here with this friends. Post your concerns. we will all or some will answer you. Know that I wish you to be blessed with many pain free days. Greg > > 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 16, 2009 Report Share Posted April 16, 2009 , 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 16, 2009 Report Share Posted April 16, 2009 , I agree with Darlene. We don't care of you have a diagnosis or not. You need support, whatever it turns out to be. The challenges of dealing with NS or any autoimmune disease means that you've had to make life style changes-- to live with chronic illness. Don't hide away, we are a family that will welcome you-- no matter what. Blessings, Tracie NS Co-owner/moderator Subject: Re: Do I belong?To: Neurosarcoidosis Date: 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 16, 2009 Report Share Posted April 16, 2009 Welcome & Eddie! I got a letter from my neurologist today. He's leaving town to go back to Mayo in Rochester MN. Big Bummer. I've been seeing him for 5 years and he's so friendly, caring & interested. He's mainly an MS specialist. He's the first one that I had ever heard the word "sarcoidosis" from and the one that referred me to Dr Baughman. I guess I'll have to check out the other docs in the practice. Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... 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...
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