Life Doesn't Stop...Just Because I Have To

Last updated: August 2022

Hi, my story is all over the place. Starts in about 1995. I was a Manager for a non-profit snack bar. This snack bar was the major source of revenue for the non-profit.

I felt like I was looking in on myself

I would go in every morning, set up the register for the day, do the everyday basic accounting for a business like this, then go on with my day. One day in I think May-ish?, I went into work as I normally did. I'd been feeling out of sorts for a few days, but just thought I was getting sick. I went to open the safe and for the life of me I couldn't remember not only the combination but HOW to open a safe. I walked out of the office, to get another cup of coffee, looked around, and had no idea what I had gone out there for, or what I had just been doing. It wasn't anything or any way I had ever felt. I felt like I was looking at me doing stuff, you know, like looking through a window at what was happening around me, but not knowing what my part of it was.

I was young, so it must just be in my head, right?

So for months, I went back and forth to doctors trying to find out what was wrong, and being 1995 and a 20 something female, it was all in my head, there was nothing wrong, was I sure I wasn't taking drugs or drinking? I was tested for everything from Thyroid to HIV.

Then my dentist said something really surprising

Cut to April 1996, for a reason that is another story for another time, I was in Arkansas. Hot and humid like I had never felt being from Utah. One morning I woke up and had the worst tooth pain. Felt like an abscess. Only problem was the place where I felt it didn't have a tooth in it. It had broken and been pulled years before. So I find an emergency dentist that took those full head xrays, you know, standing and the machine goes all around your head. I don't know what he saw, but whatever it was, he told me his mom (?) had MS, and he really thought I should go see a neurologist and get tested for MS. So I did. And headed home to Utah where I would be safe and could find out what was wrong. And on May 8, 1996, I received a diagnosis of RRMS. Floored me, I wasn't even 30 yet.

I knew something was happening, I just didn't know what

And apparently all the cognitive stuff from before? Yeah, it was my 1st exacerbation. I just didn't know it. I had 2 plaques that 1st MRI. And in those days, you really didn't get tested for MS, they tested and ruled out everything else, and by process of elimination, Multiple Sclerosis was diagnosed. And you had to have at least 2 plaques showing on the MRI or they wouldn't diagnosis it.

Trying to find what works for me

In the past 25 years, I have tried Avonex, Copaxone (2 or 3 times), Tysabri, Tecfidera, and the last one I tried was Ocrevus. I can't take any of them. Avonex made me paranoid and full of psychotic anxiety, which wasn't a side effect then, but is now. thank God! There were only 3 DMTs then, Avonex and Betaseron are pretty much the same, and Copaxone. Copaxone was my only other option. It had no effect on my disease. Tried it again a few years later, still no effect. Tysabri came out, and I gave it a try. I had an anaphylactic reaction. So that was a no go. Next I tried Tecfidera, I was excited, because it was a pill and I wouldn't have to have shots or IVs. That wasn't a contender when the 2nd day made me violently ill, threw up for 4 straight hours, and it was probably longer than that, but my Hubs just left, so I can't ask him. The last one I've tried was Ocrevus, that was February 2020. Which coincides with the outbreak of Covid-19 and subsequent pandemic. I didn't get Covid, but what I did get was a new exacerbation 4 weeks after the infusion and an MRI with new active lesions where there hadn't been any before. My lesions have always stayed in my brain. These were in my spine. So I don't take that any more either.

For all of you MS Warriors that have found a DMT that is effective for you, be grateful, appreciate the miracle it is, because some of us, well we can't take any of them. And don't trust the new ones that come out.

So, any way, that's my story. Thanks for letting me share it with you.


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