Progression Fears and Concerns
Last updated: March 2022
My multiple sclerosis seems to be getting worse. There, I said it out loud. The biggest MS concern I have might be coming true. My usual symptoms are occurring more often, in addition to a new one or two. I am bad at keeping track of my issues, so I do not have an objective measure. However, I do not need one. I know when they come on. They are more frequent.
Tracking MS symptoms
If you are living with MS you can probably relate. You may be vigilant in documenting each pain or arm drop. You could have downloaded one of the apps available that tracks your symptoms over time and can show you trends. I am not one of those people. I have been meaning to do better in this area, but I have not. Privacy concerns have made me wary of sharing my information. Yet, I have not done something as simple as making a note in my calendar.
MS progession concern versus fear
I have never lived in fear about my MS diagnosis. It might be because of the Emergency Room doctor who first informed me that I had the classic signs of multiple sclerosis. He was almost nonchalant in his telling. The very first comment out of his mouth was that I was not going to die. He did not dramatize the moment or speak to me with sadness. Perhaps he set the stage for my own shoulder-shrugging at this disease. I was not in a place where there was time for a longer discussion about what lay ahead.
There is a definite difference between concern and fear. For me, concern has always been about keeping an eye on my symptoms and making sure that my healthcare team is aware of any changes. It has been worries over possible new issues or worsening old ones. Fear was being super observant and worried at every twitch or pain. I did not want to live in fear, which to me, meant not living at all.
Physical changes over time
I have always been aware that MS is generally a chronic illness with unknown progression. MRIs are used to chart my progression or lack thereof. I have happily been labeled as 'stable' with no lesion growth or additional ones. However, how I feel does not necessarily reflect this fact. Symptoms that I have lived with for years are making more appearances. Spasticity that was focused predominantly on my right arm has shifted to the left. Tinnitus happens out of the blue more often and trigeminal neuralgia, aka sparky jaw, shows up a couple of times a week where it was maybe monthly earlier in time.
Because I failed to keep better track, I have no idea if I missed the slow progression and am just now aware of it. All I know is that the Anita living with MS four years ago does not resemble the Anita now. And that is the tricky thing about MS. The progression can slip by unnoticed until much later.
I had a lovely conversation with a woman who runs a multiple sclerosis Facebook group. She was diagnosed with secondary progressive. When I talked about my worsening symptoms and concern that I might be moving into secondary progressive myself, she related what her own physician said: "It happens and it is okay." She let me know that there was nothing to fear about possible progression. She was still living her best life albeit with greater challenges than before. Not only did she not fear MS, but she also was not concerned about the labels put on us by the healthcare system.
This conversation gave me strength and a new outlook on my MS. Moving into a new stage was just a part of having multiple sclerosis. I have nothing to fear or be concerned about. I just need to live my best life.
Do you use any of the following assistive devices?
Join the conversation