Sorry if I'm posting too much on here lately, this is all still so new to me. I was diagnosed with CIS late last year and started Copaxone in Nov 2018. It all started when my neuro ordered a brain MRI for a increase in headaches/migraines. That MRI showed lesions most indicative of MS.
I had a ton of blood work to rule out other causes. I also had a cervical MRI (normal) and a lumbar puncture (positive for oligoclonal bands). No T spine MRI (should I ask for one)? For a short while, they just had me in the RIS group because my symptoms (won't go into detail about all of them) weren't classic enough for an MS diagnosis. The main one would be some tingling/pinpricks in hands or feet, but that tends to be on both sides, though not necessarily at the same time. I'm not sure if it falls into 24 hours or more since it happens every day, but it comes and goes throughout the day (thoughts?).
Anyway, shortly after I had an episode of nystagmus. It didn't last very long, but woke me from sleep! With everything considered together, my neurologist (an MS specialist) changed my diagnosis to CIS and I started Copaxone.
Back to the title of this post. I am still adjusting to all this, and at times I am absolutely terrified! I'm so scared of all the unknowns. I'm so scared of eventually experiencing life altering symptoms like debilitating fatigue, chronic pain, mobility or cognitive issues, etc. I know not everyone experiences severe problems, but some do! I'm terrified of ever having to switch DMTs because the side effects and risks of them are so scary. In short, I'm just plain scared.
I know no one here can fix this (or you'd all be rich ), but I figured at least we all could relate on some level.
I had a ton of blood work to rule out other causes. I also had a cervical MRI (normal) and a lumbar puncture (positive for oligoclonal bands). No T spine MRI (should I ask for one)? For a short while, they just had me in the RIS group because my symptoms (won't go into detail about all of them) weren't classic enough for an MS diagnosis. The main one would be some tingling/pinpricks in hands or feet, but that tends to be on both sides, though not necessarily at the same time. I'm not sure if it falls into 24 hours or more since it happens every day, but it comes and goes throughout the day (thoughts?).
Anyway, shortly after I had an episode of nystagmus. It didn't last very long, but woke me from sleep! With everything considered together, my neurologist (an MS specialist) changed my diagnosis to CIS and I started Copaxone.
Back to the title of this post. I am still adjusting to all this, and at times I am absolutely terrified! I'm so scared of all the unknowns. I'm so scared of eventually experiencing life altering symptoms like debilitating fatigue, chronic pain, mobility or cognitive issues, etc. I know not everyone experiences severe problems, but some do! I'm terrified of ever having to switch DMTs because the side effects and risks of them are so scary. In short, I'm just plain scared.
I know no one here can fix this (or you'd all be rich ), but I figured at least we all could relate on some level.
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