Guest guest Posted March 24, 2008 Report Share Posted March 24, 2008 I was told when I was 6 years old that I had Juvenile Rheumatoid Arthritis. But last August, (33 years old) the pain I have had all my life suddenly changed. I could not stand the pain in my hands and ankles. Worse than ever. I noticed that I started feeling weaker, not being able to do as much as before. I had a baby in June and just thought it was from that. My rheumatologist tried telling me that I dont even have arthritis. So discouraged at why I felt so poorly, I just tried to manage pain and weakness and get through every day. By November I was so weak, I fell down a stairs and was in hospital. Still noone seemed concerned about my weak muscles, numbness and tingling in my right arm and right leg. In December, I started getting muscle spasms, bad cramps and even weaker muscles, extreme dizziness, tremendous headaches like I have never felt before. I also started having short term memory problems/confusion. I have been to 6 different doctors, including rheumatologists, neurologists, 2 different hospitals and still feeling worse, not myself at all. It takes all my energy to even shower. I cant feed or hold my now 9 month old baby or safely carry him up and down stairs. I can no longer drive, and I havent worked since November. Fatigue is such a problem that after spending time doing the smallest task, I can sleep for hours. Finally, I saw a neurologist who checked me for multiple sclerosis, found something in a test result. Up to this point, all my tests and blood work were coming back normal and doctors thought maybe I needed to see a psychiatrist!!! No one seemed to understand that I know how I feel and this is not normal, or in my head! My spinal tap came back with highly elevated white blood cells, lymphocytosis, CNS vasculitis, mononuclear pleocytosis, aseptic meningitis. Is this what you all are going through? Does this sound familiar? I just want someone to find out, give me some medication or something, to help with some of this pain. I do not even want to get out of bed. My muscles really bother me, and my head feels like it is going to explode. Is this all characteristic of neurosarcoidosis? I would greatly appreciate anyone who would respond. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2008 Report Share Posted March 24, 2008 I was told when I was 6 years old that I had Juvenile Rheumatoid Arthritis. But last August, (33 years old) the pain I have had all my life suddenly changed. I could not stand the pain in my hands and ankles. Worse than ever. I noticed that I started feeling weaker, not being able to do as much as before. I had a baby in June and just thought it was from that. My rheumatologist tried telling me that I dont even have arthritis. So discouraged at why I felt so poorly, I just tried to manage pain and weakness and get through every day. By November I was so weak, I fell down a stairs and was in hospital. Still noone seemed concerned about my weak muscles, numbness and tingling in my right arm and right leg. In December, I started getting muscle spasms, bad cramps and even weaker muscles, extreme dizziness, tremendous headaches like I have never felt before. I also started having short term memory problems/confusion. I have been to 6 different doctors, including rheumatologists, neurologists, 2 different hospitals and still feeling worse, not myself at all. It takes all my energy to even shower. I cant feed or hold my now 9 month old baby or safely carry him up and down stairs. I can no longer drive, and I havent worked since November. Fatigue is such a problem that after spending time doing the smallest task, I can sleep for hours. Finally, I saw a neurologist who checked me for multiple sclerosis, found something in a test result. Up to this point, all my tests and blood work were coming back normal and doctors thought maybe I needed to see a psychiatrist!!! No one seemed to understand that I know how I feel and this is not normal, or in my head! My spinal tap came back with highly elevated white blood cells, lymphocytosis, CNS vasculitis, mononuclear pleocytosis, aseptic meningitis. Is this what you all are going through? Does this sound familiar? I just want someone to find out, give me some medication or something, to help with some of this pain. I do not even want to get out of bed. My muscles really bother me, and my head feels like it is going to explode. Is this all characteristic of neurosarcoidosis? I would greatly appreciate anyone who would respond. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2008 Report Share Posted April 3, 2008 I'm sorry for the late respone to you email, Yes these symptoms are like NeuroSarcoid the problem is that the NS symptoms can appear like many other diseases, the one thing in your letter that really struck me was that you had JRA when you were 6, I have a niece with JRA, and there are about 4 of us in this same family(same blood line) who have Sarcoidosis, Her docter even told her the JRA could be related to the Sarcoid in the family. Just thought I would share that with you. I hope you have more answers by now. Marla I was told when I was 6 years old that I had Juvenile Rheumatoid Arthritis. But last August, (33 years old) the pain I have had all my life suddenly changed. I could not stand the pain in my hands and ankles. Worse than ever. I noticed that I started feeling weaker, not being able to do as much as before. I had a baby in June and just thought it was from that. My rheumatologist tried telling me that I dont even have arthritis. So discouraged at why I felt so poorly, I just tried to manage pain and weakness and get through every day. By November I was so weak, I fell down a stairs and was in hospital. Still noone seemed concerned about my weak muscles, numbness and tingling in my right arm and right leg. In December, I started getting muscle spasms, bad cramps and even weaker muscles, extreme dizziness, tremendous headaches like I have never felt before. I also started having short term memory problems/confusion. I have been to 6 different doctors, including rheumatologists, neurologists, 2 different hospitals and still feeling worse, not myself at all. It takes all my energy to even shower. I cant feed or hold my now 9 month old baby or safely carry him up and down stairs. I can no longer drive, and I havent worked since November. Fatigue is such a problem that after spending time doing the smallest task, I can sleep for hours. Finally, I saw a neurologist who checked me for multiple sclerosis, found something in a test result. Up to this point, all my tests and blood work were coming back normal and doctors thought maybe I needed to see a psychiatrist!!! No one seemed to understand that I know how I feel and this is not normal, or in my head! My spinal tap came back with highly elevated white blood cells, lymphocytosis, CNS vasculitis, mononuclear pleocytosis, aseptic meningitis. Is this what you all are going through? Does this sound familiar? I just want someone to find out, give me some medication or something, to help with some of this pain. I do not even want to get out of bed. My muscles really bother me, and my head feels like it is going to explode. Is this all characteristic of neurosarcoidosis? I would greatly appreciate anyone who would respond. -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2008 Report Share Posted April 3, 2008 I'm sorry for the late respone to you email, Yes these symptoms are like NeuroSarcoid the problem is that the NS symptoms can appear like many other diseases, the one thing in your letter that really struck me was that you had JRA when you were 6, I have a niece with JRA, and there are about 4 of us in this same family(same blood line) who have Sarcoidosis, Her docter even told her the JRA could be related to the Sarcoid in the family. Just thought I would share that with you. I hope you have more answers by now. Marla I was told when I was 6 years old that I had Juvenile Rheumatoid Arthritis. But last August, (33 years old) the pain I have had all my life suddenly changed. I could not stand the pain in my hands and ankles. Worse than ever. I noticed that I started feeling weaker, not being able to do as much as before. I had a baby in June and just thought it was from that. My rheumatologist tried telling me that I dont even have arthritis. So discouraged at why I felt so poorly, I just tried to manage pain and weakness and get through every day. By November I was so weak, I fell down a stairs and was in hospital. Still noone seemed concerned about my weak muscles, numbness and tingling in my right arm and right leg. In December, I started getting muscle spasms, bad cramps and even weaker muscles, extreme dizziness, tremendous headaches like I have never felt before. I also started having short term memory problems/confusion. I have been to 6 different doctors, including rheumatologists, neurologists, 2 different hospitals and still feeling worse, not myself at all. It takes all my energy to even shower. I cant feed or hold my now 9 month old baby or safely carry him up and down stairs. I can no longer drive, and I havent worked since November. Fatigue is such a problem that after spending time doing the smallest task, I can sleep for hours. Finally, I saw a neurologist who checked me for multiple sclerosis, found something in a test result. Up to this point, all my tests and blood work were coming back normal and doctors thought maybe I needed to see a psychiatrist!!! No one seemed to understand that I know how I feel and this is not normal, or in my head! My spinal tap came back with highly elevated white blood cells, lymphocytosis, CNS vasculitis, mononuclear pleocytosis, aseptic meningitis. Is this what you all are going through? Does this sound familiar? I just want someone to find out, give me some medication or something, to help with some of this pain. I do not even want to get out of bed. My muscles really bother me, and my head feels like it is going to explode. Is this all characteristic of neurosarcoidosis? I would greatly appreciate anyone who would respond. -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
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