Unsolved Mystery * Update * My Medical Condition

Some of you know that in August of 2019 I lost some vision in my left eye. It was like a sheer, black veil just lowered and I was looking through a dark screen, seeing only bits and pieces of what was around me. I waited a few days to see if it would get better on its own but it only got worse. In addition to the vision loss, now there was a sever pain and my eye wouldn’t stop watering. I went to urgent care. The doctor there took a quick look and told me I needed to go to the ER. It was just right across the street, so that part didn’t take too long. I don’t remember the actual visit taking that long either. They told me I needed to go the the ER at the U of M. I needed a specialist. It was a long day. I think it ended up being about 15 hours total that we waited, did testing, drops, MRI’s etc. Finally, there was a diagnosis. Optic Neuritis, a condition in which the optic nerve is damaged temporarily by inflammation. They don’t know what causes it or triggers it but I worked with an optic neurologist for several months, improving briefly while on IV steroids in the hospital. Finally the doctor said it could take up to a year for it to go away.

At the year mark, there was no improvement. There was no more testing, suggestions only apologies. Until I went in for a new pair of glasses. The optometrist referred me to a closer optic neurologist who did a CT scan of my brain. The was a lesion. One lesion didn’t exactly mean anything, she suggested I see an even more specific type of doctor (don’t remember what kind now).

During this time, I was also experiencing a lot of nerve pain. Whenever I brought it up at appointments, it was chalked up to diabetic neuropathy. I guess it kinda felt the same. I also became fatigued easily. I was moody, so very moody. We’re in a pandemic though! I was also having motor trouble. Not remembering words, asking for a hamburger with “red & yellow” instead of ketchup and mustard but for a lot of things. This was by far the scariest symptom for me. I’m a writer. I WILL NOT forget words.

My first appointment with Dr. Jewell, he ordered an MRI of my cervical and thoracic vertebrae. He also ordered a lumbar puncture (spinal tap) and we’d meet again when he had the results.

The results that explained everything.

There was another lesion on my spine where the thoracic meets the cervical vertebrae.

I have Multiple sclerosis (MS).

But doesn’t MS mean multiple scars I asked?

“You’re forgetting the one on your brain. That’s two, technically multiple scars.”

I don’t remember much of the appointment after that, I don’t know why I would tune out at the moment… I guess it was shock. All of this started over a year and a half ago. I had no idea they were connected.

I’ve had a couple of weeks to sit with this and I started treatment today.

The treatment option with the least amount of risk is a daily injection. Not a big deal, I take four shots of insulin a day already. My arthritis medication is a shot. It’s only once a month but guess what? It was today. I gave myself six shots today and it was miserable.

I’m scared.

I want to be informed but not overwhelmed. It’s hard to know what to trust on the internet. I did join a Facebook MS group and have read that several people have recovered their sight and that gives me hope.

I will remember when I started insulin, 17 years ago. I didn’t think I’d ever be able to myself myself a shot! Now I do it multiple times a day and most of the time, I don’t even feel it. It’s a minor inconvenience with a huge payoff.

Today I put in a call to my doctor about what specific type of MS I have because I guess there are three or four different kinds? I will take the days as the come. I will go in for repeat MRI’s in three months to see how the treatment Copaxone is working.

I will see multiple accomplishments instead of multiple scars.


Published by spiredone

I am what a majority of the general population would call "crazy" and at this point in my life, I wear that label with love. I am a lifelong circus act. I'm focusing on balance while learning to juggle. I write about deeply overwhelming emotions like grief and I also go out and perform stand up comedy. I am a constant work in progress, as we all are. So, join me on my journey if you'd like but respect is a must. Otherwise I'll have my elephant crush you in the center ring, under the Big Top. :) Seriously, who needs that negative shit in their life? Namaste.

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