Resilience in MS

In January of 2017 my neurologist ordered an MRI of my spine looking for answers for my symptoms. The results came back and their was a fairly large spot on my cervical spine. I was immediately referred to a neurological oncologist. At the time, I remember my husband being scared, I wasn’t thinking “oh god Cancer”, I just wanted answers. I wanted reassurance that I wasn’t crazy. I needed confirmation that there was a medical reason other than stress, for what was happening to my body. It had already been months of continuous decline in my health, and getting those answers, whatever they were, was crucial.

After reviewing my scans, he informed us it was NOT cancer. Whew, there was a sigh of relief from both of us. He did tell us that he believed it was MS, and referred me back to my local neurologist.

I live in a small town, just outside of a popular vacation spot. Their aren’t many neurologists and certainly none that specialize in Multiple Sclerosis here. It took a couple weeks to get back in to see him. My local neurologist had no bedside manner, he was pretty arrogant and kind of an ass. He wound up referring me to a buddy of his, another neurologist that was 2 towns over. That doctor ran some nerve tests (EMG & NCS), and took blood. He also took a look at my brain MRI from 2 months ago. After all of that, he definitively diagnosed me with Multiple Sclerosis. Their were small lesions on my brain scan and one on my cervical spine. I was relieved and felt vindicated, I finally had a diagnosis. I was ready to fight the disease and get my life back. Or so I thought…….

I then returned back to my local Neurologist, (The Ass), and he started me on Copaxone. If you don’t know, Copaxone is a self administered shot taken 3 times a week. Their are no long term side effects, yet the shots are painful. I was not deterred. I believed this was the answer. I was willing to endure the pain to get my life back again and stop any progression of the disease.

My symptoms at this point were:

Neuropathy in hands and feet, weakness in upper extremities, muscle spasms in neck and shoulders, brain fog, migraines, fatigue, heat intolerance, and optical neuralgia.

Over the next year, these symptoms didn’t go away. Every day was still a struggle. I was losing myself and my life was being taken over by MS. The beast was winning. I couldn’t be the mom, wife, or employee I had been. I was breaking down, both body and mind.

To be fair, I was a nightmare patient, calling and scheduling more appointments, looking for answers, things that I could do to help. I talked about diet changes or eastern medicine ideas. I was spending my endless days in bed, researching. There had to be something to make this living nightmare better. But, The Ass would just prescribe pill after pill. Never willing to discuss lifestyle changes I could be making. He was my doctor and I did as I was instructed. After taking the prescribed meds, I started to feel like a walking zombie. I believed my doctor knew what he was doing, but in the end, he didn’t.

After a year on Copaxone, I began to lose the ability to walk. My gait was off, and the weakness in my legs was overwhelming. I was relegated to a wheel chair for long periods of walking. Each day I woke up wondering what was next.

Something to know about us, we are a family that enjoys traveling. My girls at the time were 5 & 9 and very much into amusement parks and zoos. We would take these wonderful summer trips to various parks. I would use the motorized wheelchairs to get around. My girls thought it was great. They could ride on my lap when they got tired of walking. It was convenient to have, mean while a part of me was dying inside.

The heat of the long days would exhaust me. But I wasn’t willing to forgo those trips and making those memories and having that family time. I was not gonna be the party pooper. It wasn’t gonna be because of me that we couldn’t do this or that. Yet those trips would wear my body down. I would come back and be exhausted and my symptoms would be even more exacerbated. It would take another week or two afterwards for me to rebound after those trips.

I was living in denial. I wasn’t this person, this couldn’t be my life. I was 43 and felt like an 80 year old woman. I still wanted to work, and be the mom that did it all, the wife that always had it together. But at this point I wasn’t capable of being that person anymore.

With no improvement and an additional symptom, I had another MRI. By this time, I had reached my limit of dealing with The Ass. His condescension led me to start researching neurologists that specialized in MS. I scheduled an appointment with a doctor who was 3 hours away. I didn’t really care how far I had to travel at the time; I just wanted to stop the disease from progressing further. I wanted the full use of my legs back. I wanted the nightmares of waking up without the use of my legs to stop. I needed him to have the answers and solutions.

He wound up being a lifesaver! I had brought all of my test results and MRIs with me. Once he reviewed all of my information and ran some tests of his own, he determined that Ocrevus was the best option for me. I was taken off Copaxone and the many pills I was prescribed. I started the Ocrevus treatment in Feb 2018. It would take another 2 years for me to feel the full effects of the Ocrevus. Those were trying and difficult years, full of frustration but also determination.

I was willing to travel 3 hours back and forth for treatment and appointments over those next few years. It wasn’t easy going back and forth, but I wanted a doctor whom I trusted. He was very knowledgeable about MS, and that gave me security. Over time, my symptoms became less severe; the neuropathy in my hands and feet was improving. I was starting to have more good days than bad. For me, the Ocrevus treatment has been a success. I was not symptom-free, but I started to have hope again.

For those that suffer from MS, do you have a doctor you trust? Are you on a medication that is improving your lifestyle? I know this disease shows up differently in everyone and the severity also varies. I don’t claim to have answers, this is just my journey. But finding a doctor that specializes in MS was a crucial point for me. I found him through the National MS Society.

Find Doctors & Resources Near You | National MS Society

It’s now been 8 years since my diagnosis, I am not free of symptoms, I still have bad days. I am able to walk long distances without the use of wheelchair. So in my opinion Ocrevus saved me from being wheelchair bound. Their are all types of DMT’s (disease modifying treatments) out there. If you have this beast, or one similar, I hope you are finding the right support, doctors and treatment to help you live a full life. If you have comments, I’d love to hear your story.