My neurology visit was uneventful yesterday for the most part. He did a quick exam and during the exam he said I always forget how myelopathic your MS has always been. He always says that to me. ￼First I had a remember what myelopathic meant and then I remembered what he meant. Myelopathic is referring to the spinal cord. What my doctor means is that my MS is in my spinal cord not in my brain. All my symptoms fall into spinal cord related symptoms. Even though I have lesions in my brain, mostly everything that I have is related to spinal cord. I’ve looked many times on the web to see if there is any difference or a noted difference somewhere in MS, including this morning, but there really isn’t anything that separates the two. MS is MS. There isn’t a type that affects the brain more than the spinal cord or vice versa. However where MS presents obviously will affect different parts of the body. I know that lesions in the brain could complicate cognitive reasoning , cause vertigo, cause sight issues or ￼￼even bring on ringing in the ears. I have had optic neuritis on the onset of my disease and one other time, but the other types of issues I’ve never really experienced with MS. I am all those classic issues of numbness, weakness, gait difficulty and balance problems since I was diagnosed. ￼￼￼
I think what surprises me still is how different it all could be for each person. My friend is suffering from her second relapse in 15 years. She had 5 days of IV steroids. I am amazed. I averaged 2 relapses per year with those steroid infusion for my first 17 years of having MS. I’m so glad my friend is feeling better now but it is amazing how much we differ. I also know my brother in law’s cousin also for over 10 years. I have never seen her at any family gathering with any signs of her MS. Nothing!!! Not even a misstep. Then there is me. I had a severe relapse in 2014 that started my disability and I’ve been on a steady progressive decline since. I’m not complaining that my MS should be better than others I just find it crazy how different it could be for everyone.
Looking back I’m not surprised at my own MS path. I had a pretty severe relapse after optic neuritis first showed. It travel down from my face to my down my entire left side. I was out of work for 3 months. I was put on Betaseron immediately. It was a long time ago. No disease modifying drug held me and I still had relapses six months. My MS was never quiet. Now I’m at this stage with my wheelchair and accepting my new reality. Doesn’t mean that my fate will be your fate. Doesn’t mean it won’t. It means MS is completely unpredictable in everyone.