6 years ago in 2009 (e.g. before new 2010 McDonalds criteria), I had a CIS (optic neuritis and numbness on left side of my body). It came out of nowhere, so I wasn't prepared with info or anything. My MRI scan showed only 1 lesion on the brainstem. I had a LP which was normal. They treated me with steriods and I improved after about 1 month.
A 3 month follow-up MRI, I had developed 1 small additional lesion. At this point, they did mention something about treatments, but since they could not give me a diagnosis of MS then, it would be out-of-pocket, which we definitely could not afford. And anyways, they said we'd wait to see what the 6 month follow-up looked like.
So, at 6 months there was no progression in lesions. At this point they basically said, "good luck" and come back if you have more symptoms. I have had absolutely no symptoms in 6 years since then and honesly more or less forgot about it. Then 2 weeks ago, I developed numbness in my upper right thigh and some slight dizziness. I am scheduled for an MRI in the next few weeks.
I am already prepared for CDMS, but I am now worried that I have been 6 years without any DMT and how bad that will be for future prognosis. I feel slightly angry that I didn't have the options already back then and that there were no follow ups. I feel like I didn't get enough info at that time to know how serious this was. Just wanted to get this out there and hoping for the best from the MRI.
A 3 month follow-up MRI, I had developed 1 small additional lesion. At this point, they did mention something about treatments, but since they could not give me a diagnosis of MS then, it would be out-of-pocket, which we definitely could not afford. And anyways, they said we'd wait to see what the 6 month follow-up looked like.
So, at 6 months there was no progression in lesions. At this point they basically said, "good luck" and come back if you have more symptoms. I have had absolutely no symptoms in 6 years since then and honesly more or less forgot about it. Then 2 weeks ago, I developed numbness in my upper right thigh and some slight dizziness. I am scheduled for an MRI in the next few weeks.
I am already prepared for CDMS, but I am now worried that I have been 6 years without any DMT and how bad that will be for future prognosis. I feel slightly angry that I didn't have the options already back then and that there were no follow ups. I feel like I didn't get enough info at that time to know how serious this was. Just wanted to get this out there and hoping for the best from the MRI.
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