My Daily Life With Relapsing-Remitting MS

photo fo ashley ringstaff

My Daily Life With Relapsing-Remitting MS

By Ashley Ringstaff, as told to Rachel Ellis

Just after I gave birth to my second son in early 2009, I started having random numbness in my body and face. My doctors weren’t concerned. They chalked it up to post-birth hormones, stress, or maybe even Bell's palsy (sudden weakness in the muscles in your face). I was always tired and my brain felt fuzzy. But because I was a new mom, it took a long time for me to convince my doctors that this was more than postpartum fatigue.

I knew my body. Something was off.

Finding the Cause

Nearly a year after my symptoms started, I was finally able to get in to see a neurologist. When he diagnosed me with relapsing-remitting multiple sclerosis, I was in complete shock.

I was only 22. I had no idea what MS was. My neurologist handed me a DVD and said, "Here, watch this, and call this number if you have questions.” The video was for a specific MS treatment, and it featured mostly older people in wheelchairs.

That scared me. No one on the DVD looked like me.

Getting Support

I decided I needed to find information in a way that felt more comfortable for me -- online. It was there I found communities that became my lifeline of support. I got involved with the forums on a resources website called MS World. I met people of all ages with MS, even parents whose children had it.

Over time, I started to volunteer for the group. I did their social media. I even started interviewing experts at conferences. It all helped me educate myself to learn what I could do better for me.

Along with my husband and my mom, who is an RN, I leaned heavily on my online support system in those early days. It was vital for me. It was especially important when, shortly after my diagnosis, I had a relapse that landed me in a wheelchair for a month and temporarily robbed me of my sight. Thanks to my digital community, I was able to connect with people who said, “This happened to me, too.”

That was so helpful.

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The Search for What Works

Since my diagnosis in 2010, I’ve had five relapses that required steroid treatment. I’ve also gone through six different MS medications with my doctors, trying to find the right one. When I got MRIs, I had a lot more lesions than I should have had, even if I felt like I was doing OK. I was on multiple prescriptions, and they all interacted with each other. It made me extremely tired.

I kept wondering when I was going to be a functional human being again. Along with my fatigue, I went through flu-like symptoms, reactions where I had my injections, and gastrointestinal issues. Every treatment came with terrible side effects.

Finally in 2017, we landed on an option that seemed to keep my MS in remission without making me feel awful.

Not coincidentally, 2017 is also when I found a diet that helped me lose the extra weight I’d gained since my diagnosis. Over the years, I tried just about every diet that anyone said was beneficial to MS. Then I started the keto diet. It just clicked with my body. A high-fat, low-carb diet seems to be the ticket to make me feel better. It gives me energy and lets me eat the calories I need.

Since 2017, I’ve lost 120 pounds. My doctors think my current remission may be the result of my diet and my treatment. I've had nothing new show up in 2 years of MRIs. And that's the first time that's happened.

My New Normal

As far as my daily life goes, the MS is there, but it doesn’t control me.

The only medication I take every day for my symptoms is a pill to help with fatigue. That's my most constant symptom. It can make my brain work differently sometimes. When I’m tired and I'm in large spaces and there's too much going on around me -- like too many conversations or too much noise -- my brain can't handle it. I start to feel like I’m in a tube.

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I have other meds on hand for spasms and migraines when I need them.

My treatment for my MS is an infusion I get once every 6 months. On those 2 days each year, I’m in the infusion chair for about 5 hours, including the time they monitor me afterward. They give me Benadryl while I’m there to help ward off any reactions from the injections. For most people, that means a nice 5-hour nap. But Benadryl makes me wired, so I spend my 5 hours wide awake!

I’m lucky, too, because I have an employer who’s always been very understanding about what I can and can’t do. He knew I had MS before he hired me, and he believes in family -- and health -- first. For example, if there's a work event taking place outside and it's too hot for me, he encourages me to stay inside and take care of myself.

I deal with heat sensitivity. That can be a challenge living in Central Texas. When it's hot outside, I get a really heavy, worn-down feeling, so I have to make sure I keep cool.

I've learned to really listen to my body and trust it. I know I want to do certain things, but I’ll do what I have to do in spurts. You have to know your limits. If I have a day where I have a lot of energy and I go all out, I regret it later.

It helps me to take myself out of reality for a bit to help me keep my stress down. I like to read books or do crosswords. They calm me down and allow me to keep my brain sharp.

I live on a bit of land, so I also enjoy going outside in nature and playing with my dogs, or sitting on the porch. My husband and boys and I all go rock climbing, too.

I’ve always loved writing, so I started a blog in 2011 to help process my MS diagnosis. It was so cathartic to get it all out and vent. People started reading it. Some of them would tell me that I was putting into words what they felt. It feels so good to connect with people in that way.

Continued

I know that I could wake up tomorrow and find myself in a relapse without warning. But I'm not going to live in fear of that. I'm going to enjoy right now and what I'm able to do.

Just the other day as we were out for a climb, my husband said, "Who would have thought back in 2010 that right now you'd be climbing a wall?"

It was just so outside the realm of what we thought was possible back then.

When you’re new to MS, you don’t know what the future will look like. When I talk to people who've just found out that they have it, I remind them that what worked for me won’t work for everyone.

Do your own research, and use your time with your doctor wisely. Ask questions so you learn all you need to know. And keep looking until you find the right doctor, the right treatment, and the right lifestyle for you.

WebMD Feature Reviewed by Michael W. Smith, MD on June 05, 2020

Sources

Ashley Ringstaff

Mayo Clinic: "Bell's palsy."

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