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What I’d Tell Someone with a New MS Diagnosis

Real Talk

December 17, 2020

Content created for the Bezzy community and sponsored by our partners. Learn More

by Michelle Tolson for the National MS Society

•••••

Sharon Stoll, DO, MS

Medically Reviewed

•••••

•••••

by Michelle Tolson for the National MS Society

•••••

Sharon Stoll, DO, MS

Medically Reviewed

•••••

•••••

St. Patrick’s Day 2014 changed my life. This was the day I received a definitive diagnosis of multiple sclerosis (MS) by my new neurologist.

In the fall of 2013, I noticed my eye was blurry. I would rub it thinking there was something in it.

I finally made an appointment with my optometrist, thinking I may need a new prescription for my glasses. He found nothing wrong with my eyes but sent me to a specialist, who also found nothing wrong with my eyes.

They then sent me for an MRI to rule out optic neuritis and it came back revealing lesions on my brain. I was conclusively diagnosed with MS after another round of MRIs on my neck and spine.

As a dance teacher of over 30 years and a former Radio City Rockette, hearing that I had a disease that could leave me disabled brought up so many fears. I immediately wondered if I would have to quit teaching, if I would end up in a wheelchair, and who would take care of me.

My second thought was, how would I tell my mother?

For 6 months, I was stumbling along trying to figure out the healthcare system, insurance, and medications to treat my new invisible illness.

I only told very close friends and family members about my diagnosis. I hadn’t accepted this new sidekick as part of my life yet and I wasn’t ready to reveal my diagnosis to anyone else.

At my 6-month follow up, after being on medication, my MRIs showed a new lesion on my brain. My meds weren’t working, and my neurologist switched me to infusion therapy, becoming aggressive with my treatment, as she wanted me to be able to teach for as long as possible.

It was then I decided to share my story on social media. I now knew that this was my reality, my battle, my journey — and I didn’t have to do it alone.

If you’ve just been diagnosed with MS, you may be struggling with a similar experience. Here are some nuggets of wisdom to help you get through it.

Join the free MS community!
Connect with thousands of members and find support through daily live chats, curated resources, and one-to-one messaging.

It is OK to grieve

I had to realize things were going to change. Not necessarily right away, but they could at some point.

I had to give myself permission to be sad, mad, and frustrated with this diagnosis.

I cried and then I cried some more. Then I decided to take control of my MS as much as I possibly could.

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Find a doctor who clicks with you

Your doctor is your biggest advocate. You need to have someone you trust and feel comfortable with.

My doctor is incredible — and I know how lucky I am to have her. She cares about me and my life goals. She does everything she possibly can to make sure I am taking care of myself, both physically and mentally.

It may take some time to find a neurologist and build up a care team that truly gets you and your life goals, but it is so worth the time and effort in the end.

Stay active

I can’t stress this enough. When diagnosed, I was told that I had probably had the disease for over 10 years, but because I had been so active, I never noticed symptoms.

Get out and take a walk. Get some light hand weights and exercise at home while you are watching TV. Stretch, if you can, every day.

The more you do for your body, the better your body will treat you.

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Decide who your circle is

I have a group of friends in New York who know when I go to treatment and regularly check in on me that day. They also know when I am fatigued and not quite myself.

You need people around you that will try and understand MS. It is a sneaky disease that leaves you feeling different each and every day.

Some days you will totally feel like yourself. Some days you will feel like you need to sleep for 24 hours.

Your circle will help you get through this.

Don’t be afraid to reach out

Signing up with the National MS Society in NYC was a big help for me.

Reading shared information, joining groups, and volunteering my time with others that understand what I am going through makes me feel “normal” again.

I will be celebrating 7 years of living with MS in March of 2021. Yes, I use the word “celebrating” because I still teach, I still dance, I still mentor, I still volunteer.

I am still me, and that is worth celebrating 7 years later.

St. Patrick’s Day 2014 changed my life. This was the day I received a definitive diagnosis of multiple sclerosis (MS) by my new neurologist.

In the fall of 2013, I noticed my eye was blurry. I would rub it thinking there was something in it.

I finally made an appointment with my optometrist, thinking I may need a new prescription for my glasses. He found nothing wrong with my eyes but sent me to a specialist, who also found nothing wrong with my eyes.

They then sent me for an MRI to rule out optic neuritis and it came back revealing lesions on my brain. I was conclusively diagnosed with MS after another round of MRIs on my neck and spine.

As a dance teacher of over 30 years and a former Radio City Rockette, hearing that I had a disease that could leave me disabled brought up so many fears. I immediately wondered if I would have to quit teaching, if I would end up in a wheelchair, and who would take care of me.

My second thought was, how would I tell my mother?

For 6 months, I was stumbling along trying to figure out the healthcare system, insurance, and medications to treat my new invisible illness.

I only told very close friends and family members about my diagnosis. I hadn’t accepted this new sidekick as part of my life yet and I wasn’t ready to reveal my diagnosis to anyone else.

At my 6-month follow up, after being on medication, my MRIs showed a new lesion on my brain. My meds weren’t working, and my neurologist switched me to infusion therapy, becoming aggressive with my treatment, as she wanted me to be able to teach for as long as possible.

It was then I decided to share my story on social media. I now knew that this was my reality, my battle, my journey — and I didn’t have to do it alone.

If you’ve just been diagnosed with MS, you may be struggling with a similar experience. Here are some nuggets of wisdom to help you get through it.

Advertisement
Ad revenue keeps our community free for you

It is OK to grieve

I had to realize things were going to change. Not necessarily right away, but they could at some point.

I had to give myself permission to be sad, mad, and frustrated with this diagnosis.

I cried and then I cried some more. Then I decided to take control of my MS as much as I possibly could.

Find a doctor who clicks with you

Your doctor is your biggest advocate. You need to have someone you trust and feel comfortable with.

My doctor is incredible — and I know how lucky I am to have her. She cares about me and my life goals. She does everything she possibly can to make sure I am taking care of myself, both physically and mentally.

It may take some time to find a neurologist and build up a care team that truly gets you and your life goals, but it is so worth the time and effort in the end.

Advertisement
Ad revenue keeps our community free for you

Stay active

I can’t stress this enough. When diagnosed, I was told that I had probably had the disease for over 10 years, but because I had been so active, I never noticed symptoms.

Get out and take a walk. Get some light hand weights and exercise at home while you are watching TV. Stretch, if you can, every day.

The more you do for your body, the better your body will treat you.

Decide who your circle is

I have a group of friends in New York who know when I go to treatment and regularly check in on me that day. They also know when I am fatigued and not quite myself.

You need people around you that will try and understand MS. It is a sneaky disease that leaves you feeling different each and every day.

Some days you will totally feel like yourself. Some days you will feel like you need to sleep for 24 hours.

Your circle will help you get through this.

Advertisement
Ad revenue keeps our community free for you

Don’t be afraid to reach out

Signing up with the National MS Society in NYC was a big help for me.

Reading shared information, joining groups, and volunteering my time with others that understand what I am going through makes me feel “normal” again.

I will be celebrating 7 years of living with MS in March of 2021. Yes, I use the word “celebrating” because I still teach, I still dance, I still mentor, I still volunteer.

I am still me, and that is worth celebrating 7 years later.

Article originally appeared on December 17, 2020 on Bezzy’s sister site, Healthline. Last medically reviewed on December 17, 2020.


Join the free MS community!
Connect with thousands of members and find support through daily live chats, curated resources, and one-to-one messaging.

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