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Topic: Neurosarcoidosis

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Subject: Neurosarcoidosis
Date Posted: 6/10/2008 4:47 PM ET
Member Since: 6/1/2008
Posts: 96
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I was just wondering if anyone knows anything about neurosarcoidosis.  I was diagnosed about five years ago.  In the area where I live, my doctor doesn't know anything about it.  He is treating me for just sarcoidosis, which he still doesn't know much about.  I have nerve damage in my leg and my lymph nodes are so swollen that about half of my lung on one side is gone.  If you know anything about this, please get in touch.  Thanks!!  johnna27

Subject: I'm sorry you have been struggling with this its never good not to have a g
Date Posted: 10/29/2009 9:10 PM ET
Member Since: 8/23/2009
Posts: 4,581
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Hello Johnna,

My name is Elizabeth.  I have been living with Sarcoidosis since 2003.  I am only 24 now; I was 19 at the time I was diagnosed.  I persisted with problem after problem during my senior year of high school (I was 17 when it started).  No doctor had any I idea what was wrong with me.  They kept telling me I was fine and that I was making it up.  That is until in 2004 my left ankle swelled up to triple its size and I couldn’t put weight on it (It was a lymph node).  I went to the ER and they did tons of workups.   I felt like a pin cushion when I left but I had a diagnosis.  I was pretty happy until I met with my first rheumatologists and found out there really wasn’t much they could do or knew how to do about the disease.  It leaves you feeling helpless and knowing you’re going to live forever in pain. 

I had major lung involvement my lymph nodes were triple their size and my heart was also enlarged; I have major joint pains and problems.  I have not had any neuro problems that they can pin point, my doctor doesn’t like to say things are caused from sarcoidosis because then they can’t do anything about it.  I have had a problem around my left temple where it goes numb a lot or sends stabbing pain.  They don’t want to say that its caused from sarcoidosis but they have tested it for everything else so they just say there not sure.  I also have skin problems with nerves.  I don’t like to be touched because sometimes even the slightest caress ends up hurting me.  My doctor didn’t want to call that a problem from sarcoidosis either she thinks most likely I have some other disease along with it like fibromyalgia.  But its not muscle pain it’s a nerve pain so I just smile and ignore her and make my own assumptions at to where the pain comes from.        

I’m currently being treated with Imuran, and routine blood work like CBC’s and Iron levels along with Sedimentation rates (I have high sed rates ,and a high white blood count).  But I have been on every medicine known to help sarcoidosis like prednisone, plaquenil, and Methotrexate (was the worst I spent days and days at a time in the bathroom worshiping the porcelain god).  I didn’t care for any of them they all had their fair share of side effects.  There are support groups in most states these are where I would go to get my information.  A lot of the patients who get on these sites are there on Advocates which means they know a great deal about the disease and they are working on putting that information out there to the public.  Here is a site that helps you find a support group http://www.sarcoidlife.org/ I personally don’t have a support group but I have a great smart doctor and my mother who is a nurse and has been my greatest help through this. 

Your welcome to add me as a buddie and pm me if you have any other questions. or just PM me if you want.