The “Osis’s” of Multiple Sclerosis
Last updated: May 2020
Over the years since my diagnosis in 2008, I have encountered and adapted to so many obstacles that I don’t always even know I’m doing it. It’s not until I sit down to make “the list” for my next doctor visit that I recognize what I have been living with and living around. Every day has the potential to throw something new at me. Pain, numbness, weakness, vision loss cognitive decline …and I just do the best I can to keep rolling with it the best I can each day and be grateful. Some day more successfully than others, but still, I try to go with the flow and work with limitations.
Proof of degeneration is both validating and sobering
As I continue to make the downhill slide that my body seems determined to make (despite having very aggressive treatments and now run out of options), recently I came face to face with some black and white confirmation that things are not going well. I knew that already but having proof of degeneration is both validating, because most of what I experience is invisible or symptomatic, and sobering. Our symptoms and struggles don’t always show on MRI’s, but sometimes they do, and when they do, it makes me feel a little less crazy and a little more like “see, I told you”. More bright spots on my MRI’s, thinning of the grey matter and atrophy was expected, but other findings weren’t, and not enough time goes into explaining them.
I didn’t really understand all of the other “osis’s” that can add up as MS progresses. It isn’t something my doctor had ever discussed with me, which is frustrating. Sometimes I feel like they know so much that they don’t share, and just assume we either already know the connection or don’t need to know. I’m a need to know kind of person. I have known for a few years that I have degenerative discs in my neck and lower spine. Because of that, I also have bone spurs. Degenerative Disc Disease is normally an age-related disease where one or more of the discs between the vertebrae of the spinal column deteriorates or breaks down, which leads to pain that can radiate down the leg, weakness and numbness. Bone Spurs can cause pain and loss of motion in your joints. They can also cause additional narrowing of the spinal cord, pinching it off and cause more weakness and numbness in the arms and legs. All of this means that I have an overall condition of spinal stenosis.
My last MRI also confirmed scoliosis
What was new to me as of my last MRI was that I now also have scoliosis, which is a curve in the spine. MS can cause this due to the degeneration of the spine, which causes asymmetric weakness in the muscles and ligaments that support the spine. I knew I was having trouble keeping myself upright and from slouching to my left side, but I didn’t know why and now I do. It doesn’t change anything right now, but at least I know why. I plan to do more physical therapy to see if I can help support those muscles to maybe help slow the progression of the curve. I may also end up needing a brace to keep myself supported.
Multiple other degenerative ailments
I knew multiple sclerosis meant “many scars”, but I never understood that it could also mean multiple other degenerative ailments tagging along for the ride. All this time I felt like I knew what enemy I was fighting, I had no idea it was inviting other destroyers to the party. I really do try not to focus on the list of obstacles and try to go with the flow as much as possible. That being said, I also like to have all of the information so I’m not in flying blind.
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