Gradual disease progression

Gradual disease progression

How are you feeling? Seems that this is always the question asked by everyone that knows me. Today, I asked myself. I have written many blogs about lack of sleep Sleep deprived, many about accidents A horrible and humbling outing, and even some on actual feeling How are you feeling? The truth about Parethesia, but it’s been a while since I actually said how I was feeling.

I’ve had multiple sclerosis for 22 years now. My disease modifying therapy is Rituxan. I chose to stay with Rituxan instead of Ocrevus just because Rituxan has been around a lot longer, longer drug history. I am probably listed with a diagnosis of relapsing remitting MS and secondary progressive MS. I have not had a “relapse” since 2014. However, that was the one that ultimately disabled me. You might argue that the medicine I am taking is the reason for that but I personally wouldn’t. The reason I wouldn’t is I continue to get worse with each passing day.

It is a slow progression, unlike a relapse. I didn’t wake up one day unable to walk. It happened over time. The last relapse in 2014 took away tactile feeling in some of my fingers, now I have that loss in most of my fingers. It was a gradual change almost giving me time to adjust to the numbness and lack of sensation that is now throughout most of my hand and fingers. It was the same thing with my legs. It just started to become harder and harder to make the simplest of steps. I couldn’t tell you when it just progressed slowly and steadily. Unfortunately, it still progress to the point of disability making things difficult and challenging.

When people ask me, how am I feeling? Usually I feel the same. I don’t notice the subtle changes happening on a daily basis. I don’t realize the progression until I go to do something that requires a specific muscle group. Like when I fell on the floor and realized I couldn’t get up. I had no idea I couldn’t turn myself over or get myself up on my knees anymore. Those muscles just don’t connect anymore and I found out the hard way. I thankfully don’t have pain. I can suffer from fatigue and the answer “I’m tired” is definitely used often. Yet my answer for how do I feel? Is normally, “the same”. I just can’t tell anymore my disease progression. It just gets worse slowly, gradually every single day.

One thought on “Gradual disease progression

  1. I am the same. Diagnosed with PPMS in 2008 and it has been a very slow, but steady progression. Like a slow drip from a faucet sink. It doesn’t seem like much but before you know it the sink is about to overflow. I am not as compromised as you yet, but you have 10 years on me. Use Ocrevus because my insurance wouldn’t approve Rituxan. The meds certainly slow the progression, but doesn’t stop it. It is still confined to one limb, but that limb becomes more and more useless each year, and all the other stuff that comes with it, balance in particular, progress with it. I am dreading the day where it spreads somewhere else. A wheelchair is a foregone conclusion as far as I am concerned. It is just a matter of time

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