A little background

My name is Kenny Kopulos. On September 8th 2017 I was officially diagnosed with Primary Progressive Multiple Sclerosis. 

I have played ice hockey since I was 4 years old, so, for almost 32 years. Prior to the day I was diagnosed, I noticed that when I was playing hockey I would get spasms in my leg and I would fall a lot. The guys on my team would react to my constant falling by telling me to quit screwing around. I just didn't know what was going on at that point.

At work I noticed that I would get fatigued from doing even simple jobs. After 6 months of confusion and falling down, I finally went to a neurologist to figure out what was going on.

The doctor told me she was 99% sure that I didn't have MS. First she thought it might be a pinched nerve or something else of little consequence in the long run. 

After ruling out the possibility of many, many other diseases, the doctor finally did do a lumbar puncture and an MRI, and gave me the diagnosis.

Initially, I was put on a drug called Ocrevus. It is a anti-CD20 monoclonal antibody. I received IV infusions of this drug every 6 months. I didn't realize how much Ocrevus was helping me, but I progressed slowly while on it. It bothered me that my MS continued to progress, because the doctors were very optimistic and telling me how lucky I was and how good I was doing. Being in my body and feeling the changes did not give me the same rosy outlook.

Then COVID-19 pandemic disrupted my treatment. I was supposed to go for an infusion of Ocrevus in March 2020 and I declined, because I was afraid to be on a drug that targets B-cells. I figured I would need those B-cells if I were to get COVID. Which I did. Get COVID, and need those extra B-cells.

For the rest of 2020 and beginning of 2021 my PPMS began to progress rapidly since I was not on Ocrevus.

There are 3 MAIN types of MS

RRMS

SPMS

PPMS

PPMS is the most rapidly progressing type of MS. But not everyone with the same
type of MS progresses in the same way or has the same symptoms. But it SUCKS for everyone who has it.





Location: Puebla, Mexico

Comments

  1. patmacAugust 31, 2021 at 2:51 PM

    Good-luck with your treatments! I'm glad to hear you found a drug that helps!

    ReplyDelete

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