Ready… Set… Go…

It was 1992, I had moved to a new home/town and started a new job. I thought I was ready, set, and go; or so I thought. It was then that my life began changing, and it wasn’t for the better.

What I first noticed

I’m noticing these horrible headaches, balance off & then it came to the point of I could no longer walk upstairs six steps; I was having to crawl. My 10-year-old daughter had to help me get dressed/undressed. I got my hair cut short as I was no longer able to do my hair. I’m fighting a losing battle here. Then the long journey began to find out what was happening to me.

The diagnostics and doctors were never-ending

From x-ray to CT scan, PT, different medications, and absolutely nothing was changing a thing. Then I saw many different doctors, PC, neurologists, and rheumatologists. I fought every day, and the things I loved doing were slipping away like flowers, gardening, and yard mowing. This was becoming a way of life for me, and for the next 9+ years it was.

I felt so alone and defeated

I was exhausted every day, always freezing, with headaches that never left. Doctor after doctor kept saying they knew what it was, just waiting for the other shoe to fall. I heard words I never knew existed, like “Fibromyalgia “. Never heard of it. As I continued doing everything I was advised to do by my doctors, I slowly declined. I felt alone, too. I was married to a man who was a very selfish, uncaring man. He wasn’t a husband at all. I drove myself to the ER. It hurt to move my eyes, hear a noise, or even try walking. With the guidance of My Lord & Savior, I made it to the hospital.

Thank goodness for my daughter's support

The doctor said I had to get a driver to take me home, or I was staying in the hospital. He gave me an injection which allowed me to sleep. My daughter arrived, as she was the only I had; she was on a date, they both came got me home and to bed. After a good night of sleep, I didn’t feel too bad. So, we stayed at that stage for 6-8 months, then my world went dark. I couldn’t see out of right eye, I had double vision in the other along with a headache like never before, and I couldn’t walk. I’m asking my husband if he could please take me to the ER; his reply "oh just take a pill, you’ll fell better." I have no idea where I would be if it were not for my wonderful daughter. She fed, bathed & whatever we had to do.

Fast forward to 2001

My eye doctor is looking into my eyes with a light that was piercing to say the least and said they we need to go to another room for a “field test." Now, comes the verdict; “you have Optic Neuritis." An appointment for later that day was made. Then, I made some not so good choices. I drove myself to this appointment, I got an MRI, and drove home myself crying, scared & alone again. I had go back to the doctor next morning. I politely told my husband he was taking me no matter what as I could not and would not drive like that again. Reluctantly, he took me and I soon found out I really didn’t want him nor did I need him to be with me. Here we are getting ready to hear the news whatever it may be. The doctor states that I have Multiple Sclerosis or MS, with great explanation and I’m crying frantically not having the slightest idea what was happening to me. My husband begins to laugh while saying “at least we know there’s a brain." This doctor comes up out of his chair, pointing his finger at my husband “how dare you say something like that to her, this is not a joking matter."

The next few days are a whirlwind

For the next 5 days, I go to the hospital for extensive steroids. I could feel my eyes getting better. I took my first injection of Betaseron, which I was on for little over a year, then onto Copaxone along with my new neurologist, he’s to be the best in the state. I really like him. That’s when Tysabri was released. Who wouldn’t want to take an infusion monthly vs everyday. My lab work comes back and I'm good to go. Tysabri it was until Ocrevus became available. My doctor said that I should take it then since it’s only every 6 months. My first infusion went ok, sencond was ok and then I got bronchitis that would not go away. My doctor said no more Ocrevus for me. I asked if I could go back on Tysabri so new lab work was done, with not good news “you’re now JC positive." I had to get labs done monthly to keep an eye on things. I’m put back on Tysabri, with me being positive in April 2024, it’s now September 2024. My doctor has since retired.

New findings with my new doctor

My new doctor has studied my file, requested labs and the results are worse. My JC virus levels are dangerously high so I stopped the Tysabri immediately. I now have three different MRIs, along with a lumbar puncture and an appointment with a neurology opthamologist. It's January 2025 and my results are coming in rapidly. I’m anxious to hear them or so I think. He sais that my MRIs do not indicate MS. How can this even be happening to me? My results are back on the lumbar puncture as well and indicating no MS. I feel so lost and not sure how I really feel. Part of me is mad that I now am JC positive with the risk of getting a fatal PML. I’ve literally lost everything due to being ill. I've lost my job, housing, jewelry, etc.

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