Good Morning,
I saw my neurologist yesterday and he has decided that I do indeed have diagnoses of MS, even though my disease has been atypical and confusing. I was originally diagnosed in 2004 and then the undiagnosed in 2005. For the last 15 years, I was in diagnostic limbo and carried the diagnosis of Demyelinating Disease of the CNS.
Wow, I do not really know how I feel about it. Talk about an emotional roller coaster ride! Just three months ago, he insisted that it wasn't MS and by giving me the diagnosis, he would be be doing a great disservice. He felt that my medical team would stop looking for what was the actual diagnosis. My case is complex because I have Behcet's Disease with Neuro-Behcet's that can mimic MS brain/spine lesions but is a vasculitis. He did say having the diagnosis would make it easier for me to get insurance approval for MRI's and Rituximab. He has had to fight to get these approved every time, often with a peer to peer review.
My treatment plan won't change and I am scheduled for 2 more doses of Rituximab this month. He is thrilled with my response to the Rituximab despite having a breakthrough relapse 6 weeks after my initial dosing last November. My neuro exam remains very abnormal and my recovery from the optic neuritis has been disappointing but my MRI is better. I will continue to be positive and do everything I can to be as well as I can. Despite all my challenges, I'm happy that I am still able to work part-time even if it exhausting.
I'm thankful for this board and the opportunity to share our experiences and symptoms. Have a great day!
I saw my neurologist yesterday and he has decided that I do indeed have diagnoses of MS, even though my disease has been atypical and confusing. I was originally diagnosed in 2004 and then the undiagnosed in 2005. For the last 15 years, I was in diagnostic limbo and carried the diagnosis of Demyelinating Disease of the CNS.
Wow, I do not really know how I feel about it. Talk about an emotional roller coaster ride! Just three months ago, he insisted that it wasn't MS and by giving me the diagnosis, he would be be doing a great disservice. He felt that my medical team would stop looking for what was the actual diagnosis. My case is complex because I have Behcet's Disease with Neuro-Behcet's that can mimic MS brain/spine lesions but is a vasculitis. He did say having the diagnosis would make it easier for me to get insurance approval for MRI's and Rituximab. He has had to fight to get these approved every time, often with a peer to peer review.
My treatment plan won't change and I am scheduled for 2 more doses of Rituximab this month. He is thrilled with my response to the Rituximab despite having a breakthrough relapse 6 weeks after my initial dosing last November. My neuro exam remains very abnormal and my recovery from the optic neuritis has been disappointing but my MRI is better. I will continue to be positive and do everything I can to be as well as I can. Despite all my challenges, I'm happy that I am still able to work part-time even if it exhausting.
I'm thankful for this board and the opportunity to share our experiences and symptoms. Have a great day!
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