Hi, I wanted to reintroduce myself. I had a previous MS diagnosis back in 2004-2005. It was revoked in 2005, when I was suspected to have CNS vasculitis. I was treated with IV steroids for flares and then started on IVIG in 2011. The IVIG seemed to stabilize whatever it was that was causing my neurological disease.
In 2015, I suffered anaphylaxis during my IVIG infusion and ended up hospitalized for 6 days. I was then started on plaquenil for a presumed MCTD diagnosis. In 2016, I switched neurologists and she began to suspect Neuro-Behcet's disease. I was started on Imuran
I was diagnosed with Behcet's Disease in May 2017. In October of last year, I began having several falls. In January 2018, I developed severe ptosis and was thought to have a Myasthenia Gravis.
I underwent tons of testing and retesting where I was found to have several large lessons on my frontal lobes and more Oligoclonal bands in my CSF. At this time, I began to suspect MS again but was reassured that it was not. I continued to have worsening neurological symptoms and underwent frequent brain and spine imaging. There were new lesions (mostly enhancing) on each MRI. The June MRI showed lesions in my T-spine which was the first time spinal lesions have appeared. In early September, I was taken off Imuran for treatment failure with the plan to start Rituxumab.
In mid September, I developed acute optic neuritis in my left eye that was quite severe. I received high dose IV steroids and then an oral taper for 13 days. My optic neuritis has not improved.
I was started on Clemastine to try to help the optic neuritis even though it is still in research testing. I will finally get my first dose of Rituxumab in 2 weeks. The Rituxumab start was delayed because I needed multiple vaccines first and a month to make antibodies to the vaccines
My neurologist is still not calling this MS but says it is "MS like" or on the MS spectrum. My course, presentation, enhancement pattern, lesion size etc, are all atypical and that is what is preventing an actual diagnosis.
So for the time being, I sort of have MS so I am coming back to join you all to give and receive support. Thanks!
In 2015, I suffered anaphylaxis during my IVIG infusion and ended up hospitalized for 6 days. I was then started on plaquenil for a presumed MCTD diagnosis. In 2016, I switched neurologists and she began to suspect Neuro-Behcet's disease. I was started on Imuran
I was diagnosed with Behcet's Disease in May 2017. In October of last year, I began having several falls. In January 2018, I developed severe ptosis and was thought to have a Myasthenia Gravis.
I underwent tons of testing and retesting where I was found to have several large lessons on my frontal lobes and more Oligoclonal bands in my CSF. At this time, I began to suspect MS again but was reassured that it was not. I continued to have worsening neurological symptoms and underwent frequent brain and spine imaging. There were new lesions (mostly enhancing) on each MRI. The June MRI showed lesions in my T-spine which was the first time spinal lesions have appeared. In early September, I was taken off Imuran for treatment failure with the plan to start Rituxumab.
In mid September, I developed acute optic neuritis in my left eye that was quite severe. I received high dose IV steroids and then an oral taper for 13 days. My optic neuritis has not improved.
I was started on Clemastine to try to help the optic neuritis even though it is still in research testing. I will finally get my first dose of Rituxumab in 2 weeks. The Rituxumab start was delayed because I needed multiple vaccines first and a month to make antibodies to the vaccines
My neurologist is still not calling this MS but says it is "MS like" or on the MS spectrum. My course, presentation, enhancement pattern, lesion size etc, are all atypical and that is what is preventing an actual diagnosis.
So for the time being, I sort of have MS so I am coming back to join you all to give and receive support. Thanks!
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