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Multiple Sclerosis: Stories From People Who Are Living It
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Multiple sclerosis impacts everyone’s life differently, but sharing with others can help you feel part of a community. Learn from those living with MS about how they’ve grown along their journey.
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Ann Marie:It's all about being cute. I always say MS stands for Mighty Sexy.
Marni:And you know what I say?
Moyna:I love that.
Marni:What I say MS stands for is My Something. Everyone has something.
Ann Marie:Absolutely.
Marni:This is My Something. It just happens to stand for MS.
Jesse:Yeah.
Ann Marie:Yeah.
Marni:You just got diagnosed, I feel like.
Moyna:Yeah. The only thing I knew about multiple sclerosis is that my favorite singer, Tamia, was diagnosed with MS. Everything else I knew nothing about. I didn't even think it was a disease for People of Color because the only thing I've known about, outside that one singer, is usually white people.
Ann Marie:Since I was first diagnosed, for the most part, I've been stable. However, I have a lot of that invisible stuff, the brain fog. And I still have fine motor issues, so I don't do button-up shirts because I can't do that.
Marni:I never really had that issue. For me, it's like I have permanent damage with my eyes. So sometimes, the computer screen gets blurry for me. Or if I'm in a flare-up, forget about it, I can't drive. My flare-ups are so stress-induced. And when I got diagnosed, I'll never forget, the doctor said, "Did your parents get divorced? Did someone die?" And I was like, "No, I just work. I'm working a lot."
Jesse:Since this happened to me, I said, "I turned from a 33-year-old to an 80-year-old overnight." It just happened. And so all these things that happen as you age, the weakness and the mobility issues and everything, I started walking like my grandfather.
Ann Marie:What was it like getting a cane?
Jesse:I didn't mind it because I went from a wheelchair to a walker, and then to a cane. So I was happy to have the cane. And as long as it was a cool cane.
Ann Marie:Absolutely, absolutely.
Jesse:I was okay with it.
Marni:But I think one of the hardest things with MS, the question of, is this MS? Or is this because I stayed up late?
Jesse:Right.
Moyna:Yeah. Or is this parenting?
Marni:Or is this parenting? Or is this because I worked a lot?
Ann Marie:Yep.
Moyna:I'm constantly reminding myself to look at how far I've gotten in the short time I've had MS because I went from completely numb, almost losing mobility to now I'm living as good as I can be.
Marni:Learning to say, "I can't go out tonight," that will always be one of the hardest things for me, to really learn to listen to my body because I want to move on and not really think about it.
Ann Marie:Absolutely.
Moyna:And do all those things. Yeah.
Jesse:Yeah. I talk about this a lot in therapy that my instinct is to compare myself to old Jesse, to original Jesse, and not to new MS Jesse. It's a struggle to come to terms with that as far as everything, with everything in life.
Ann Marie:Absolutely.
Jesse:You're comparing to what your image was of yourself from back then versus what you're capable of now.
Marni:No two people have the same exact case.
Ann Marie:People need to see the many faces of MS.
2022 Healthgrades Operating Company, Inc. The content on Healthgrades does not provide medical advice. Always consult a medical provider for diagnosis and treatment. All rights reserved. May not be reproduced
or reprinted without permission from Healthgrades Operating Company, Inc. Use
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Multiple Sclerosis: Stories From People Who Are Living It
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Multiple sclerosis impacts everyone’s life differently, but sharing with others can help you feel part of a community. Learn from those living with MS about how they’ve grown along their journey.
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Ann Marie:It's all about being cute. I always say MS stands for Mighty Sexy.
Marni:And you know what I say?
Moyna:I love that.
Marni:What I say MS stands for is My Something. Everyone has something.
Ann Marie:Absolutely.
Marni:This is My Something. It just happens to stand for MS.
Jesse:Yeah.
Ann Marie:Yeah.
Marni:You just got diagnosed, I feel like.
Moyna:Yeah. The only thing I knew about multiple sclerosis is that my favorite singer, Tamia, was diagnosed with MS. Everything else I knew nothing about. I didn't even think it was a disease for People of Color because the only thing I've known about, outside that one singer, is usually white people.
Ann Marie:Since I was first diagnosed, for the most part, I've been stable. However, I have a lot of that invisible stuff, the brain fog. And I still have fine motor issues, so I don't do button-up shirts because I can't do that.
Marni:I never really had that issue. For me, it's like I have permanent damage with my eyes. So sometimes, the computer screen gets blurry for me. Or if I'm in a flare-up, forget about it, I can't drive. My flare-ups are so stress-induced. And when I got diagnosed, I'll never forget, the doctor said, "Did your parents get divorced? Did someone die?" And I was like, "No, I just work. I'm working a lot."
Jesse:Since this happened to me, I said, "I turned from a 33-year-old to an 80-year-old overnight." It just happened. And so all these things that happen as you age, the weakness and the mobility issues and everything, I started walking like my grandfather.
Ann Marie:What was it like getting a cane?
Jesse:I didn't mind it because I went from a wheelchair to a walker, and then to a cane. So I was happy to have the cane. And as long as it was a cool cane.
Ann Marie:Absolutely, absolutely.
Jesse:I was okay with it.
Marni:But I think one of the hardest things with MS, the question of, is this MS? Or is this because I stayed up late?
Jesse:Right.
Moyna:Yeah. Or is this parenting?
Marni:Or is this parenting? Or is this because I worked a lot?
Ann Marie:Yep.
Moyna:I'm constantly reminding myself to look at how far I've gotten in the short time I've had MS because I went from completely numb, almost losing mobility to now I'm living as good as I can be.
Marni:Learning to say, "I can't go out tonight," that will always be one of the hardest things for me, to really learn to listen to my body because I want to move on and not really think about it.
Ann Marie:Absolutely.
Moyna:And do all those things. Yeah.
Jesse:Yeah. I talk about this a lot in therapy that my instinct is to compare myself to old Jesse, to original Jesse, and not to new MS Jesse. It's a struggle to come to terms with that as far as everything, with everything in life.
Ann Marie:Absolutely.
Jesse:You're comparing to what your image was of yourself from back then versus what you're capable of now.
Marni:No two people have the same exact case.
Ann Marie:People need to see the many faces of MS.
2022 Healthgrades Operating Company, Inc. The content on Healthgrades does not provide medical advice. Always consult a medical provider for diagnosis and treatment. All rights reserved. May not be reproduced
or reprinted without permission from Healthgrades Operating Company, Inc. Use
of this information is governed by the Healthgrades User Agreement.
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Living with Multiple Sclerosis: Finding Support
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Four people living with multiple sclerosis share how turning to loved ones for support has made a huge impact in their lives.
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Marni:Words to describe multiple sclerosis for me are frustration.
Jesse:Humbling.
Ann Marie:Unpredictable.
Moyna:Depleting.
Marni:The unknown.
Jesse:Eye-opening.
Ann Marie:Inconvenience.
Marni:Patience.
Moyna:Empowering.
Jesse:Liberating.
Ann Marie:It's hard to really put just one word to what MS is.
Jesse:Early on, when I was in the hospital, somebody said to me, "Listen, this is real. This is what you're dealing with for the rest of your life. So you have two choices: you could either get depressed and go down that path and give up on life, or you can play the hand that you're dealt and make the best of it."
Ann Marie:Absolutely.
Jesse:And that's what I choose to do.
Ann Marie:There's some days you wake up and MS is doing what MS does. And you get into that place and space of darkness and hopelessness. Just trying to shake yourself out of that, it's hard.
Moyna:It's very hard.
Ann Marie:But we do it.
Moyna:It's very hard.
Marni:I just try to take this one day at a time and to really appreciate the days where I feel good.
Jesse:I've taken up mindfulness meditation, where they teach you that staying in the present and not letting your mind drift to what could possibly happen or memories of what your life was. I think if you just focus on what's in front of you and the present, you can control your stress levels.
Marni:Getting MS, silver linings, has introduced me to a plethora of people I never knew, has taught me to take care of myself, has taught me how to slow down. Sometimes I think, "Was I meant to get this illness maybe to help other people because I'm so open about it?"
Moyna:I started talking about MS because I felt so alone, I wasn't seeing anyone that looked like me. And now, I've built that into a new position. Now, I'm a social media editor. And I don't think I would've had that if I didn't get MS. And now, I just love life a lot more.
Jesse:The support system surrounding MS, I think that is-
Ann Marie:That's the key.
Jesse:When I first got diagnosed, I went into the hospital and I literally did not want parents or relatives that were there to leave the room. I couldn't be alone. And they were there for the entire stay in my hospital. Someone was there every day.
Marni:To this day, my mother is my number one advocate. And you're talking about the support system, to have an advocate besides yourself is so important.
Moyna:My son and my husband helps to keep me hopeful. My husband is such a support. He'll deal with the household stuff. He'll advocate for me at doctors. No one can say a bad word about me, even if there should be a bad word said. And my friends and my family and everyone's been so supportive.
Ann Marie:My best friend, she was totally instrumental in my healing process. You have to look at it from the angle of you're not alone. Thinking, "I, I, I. Oh, my God. I have MS," in that journey of meeting people and recognizing that it's really we, it became wellness instead of just illness.
Marni:I like that.
Ann Marie:All part of that journey.
2022 Healthgrades Operating Company, Inc. The content on Healthgrades does not provide medical advice. Always consult a medical provider for diagnosis and treatment. All rights reserved. May not be reproduced
or reprinted without permission from Healthgrades Operating Company, Inc. Use
of this information is governed by the Healthgrades User Agreement.
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All About Telehealth for Multiple Sclerosis
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Multiple sclerosis and telehealth: here's everything you need to know.
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All About Telehealth for Multiple Sclerosis
Telehealth allows doctors to care for people virtually over a phone call, text message, or most commonly, video chat.
Although some situations require an in-person visit, telehealth is a great option when you can't get to the doctor's office for your multiple sclerosis (MS).
If you're new to telehealth, here's what you need to know.
Medicare will cover telehealth visits just like in-person visits, but state Medicaid programs and private insurers vary, so confirm your coverage in advance.
With telehealth, even though you're not in the doctor's office, your private health information is still covered by HIPAA, so it will remain confidential and secure.
Although your neurologist can't give you a physical exam via telehealth, they can write prescriptions and offer quality care, especially if you prepare in advance.
Before your telehealth appointment:
- List any MS symptoms (including dates and severity), like numbness or weakness in your limbs; tremors; vision problems; slurred speech; or issues with sexual, bowel, or bladder function
- Note any side effects from your MS medications
- Verify if any medication refills are needed
- Compile a list of your health conditions and all medications
- Gather any recent clinical notes or lab results
- Record your vital signs if you own a thermometer, blood pressure monitor, or another device
- Write down any questions you have for your neurologist
- Charge your computer or phone
- Make sure your internet is reliable
- Download any telehealth apps your specific provider may require
- Find a quiet, private space to conduct the call
- Be prepared with pen and paper or a note-taking app
Turn to Healthgrades to connect with the right neurologist to treat multiple sclerosis via telehealth. And share this video to spread the word!
2022 Healthgrades Operating Company, Inc. The content on Healthgrades does not provide medical advice. Always consult a medical provider for diagnosis and treatment. All rights reserved. May not be reproduced
or reprinted without permission from Healthgrades Operating Company, Inc. Use
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My Multiple Sclerosis Confession: Stephanie
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My Multiple Sclerosis Confession: Stephanie
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I'm Stephanie, and this is my MS confession. Having MS has really impacted my life in a number of different ways. When I was first diagnosed with MS, I was in my early 20s and I had a lot of symptoms initially, and that's how I was originally diagnosed. One of the symptoms that happened early on was something called optic neuritis, where I've had vision problems in my right eye. And while over the years, it has gotten better, most recently, over the past couple of months since having a baby, my optic neuritis has become really hard to manage. So really dealing with these vision problems has been a really big challenge and has really impacted my life. Because while most people may see me on the outside and it may look like I'm fine, I'm really dealing with a lot of these challenges. And that's one of the hardest parts about having a disease that maybe looks invisible to others.
What scares me the most about having MS is really just the unknown. Symptoms can happen at any time and I don't know how severe they're going to be. And now having a small child, it really makes it hard not to know what the progression of this disease is going to be. And while I do everything that I can to stay healthy and I eat well and exercise and try to prevent new symptoms from occurring, because of new lesions, there really is just no way to know what my future is going to be with this disease. And that's really what scares me the most about having MS.
The silver lining I've found from being diagnosed with MS is that I have really made an effort to take such better care of myself. Since learning that I have MS about nine years ago, I really took an interest in trying to be the best I possibly can to my body, trying to eat well, trying to exercise, and really doing whatever I can to stay ahead of it. I also have connected with so many other families and especially women who have been diagnosed with MS over the years, and building this support network has really been something that's been so incredible throughout this journey.
2022 Healthgrades Operating Company, Inc. The content on Healthgrades does not provide medical advice. Always consult a medical provider for diagnosis and treatment. All rights reserved. May not be reproduced
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My Multiple Sclerosis Confession: Christina
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I'm Christina, and this is my MS confession.
One of the most dramatic experiences of having MS was after that first initial diagnosis, I ended up in the hospital for several weeks while they were trying to figure out the best type of treatment. And I didn't know if I'd ever be able to walk again or regain the feeling in my extremities.
The scariest thing about my condition is not knowing when the next relapse is going to happen. I could go five, 10, 20 years without having any type of symptom, or I could wake up tomorrow morning and not be able to feel one side of my body. So I think it's the fear of the unknown that's the scariest.
The silver lining of my MS is that with the right treatment, I can live a perfectly happy, healthy, and normal life. I think another silver lining is that it's really showed me that my friends and family who care about me and support me are there when I need them and that it's okay for me to slow down and not be as hard on myself.
2022 Healthgrades Operating Company, Inc. The content on Healthgrades does not provide medical advice. Always consult a medical provider for diagnosis and treatment. All rights reserved. May not be reproduced
or reprinted without permission from Healthgrades Operating Company, Inc. Use
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My Multiple Sclerosis Confession: Bianca
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My Multiple Sclerosis Confession: Bianca
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I'm Bianca, and this is my MS Confession.
I was diagnosed with MS two years ago. During this time, I had my first and second relapse. I lost control of my right arm and my right-dominant hand, and the scariest thing during this time was not being able to write or do any kind of fine-motor tasks. I also experienced horrible nerve pain along the right side of my upper body for a few months. Currently, my right hand is still numb to this day.
What scares me the most about my condition right now, I'd have to say, is my balance. My balance and pain. It's a constant thing that's on my mind when I'm walking outside and I worry that in the future, these flare-ups will eventually take over any kind of enjoyable life that I might have. I think, like many people who have MS, the unknown is the scariest part about this disease because it is so unpredictable. And it's pretty mysterious, so you never know what's going to happen in the future.
The silver lining of my condition, I would have to say, is the things that MS has shown me that I'm capable of doing. I really work hard in focusing on healthier lifestyle habits and just promoting happiness on a daily basis, which is something I've always worked towards. But now having this diagnosis, I'm really mindful about not wasting a day and practicing gratitude and appreciation. There's a thin line between the things you can and cannot control, and that's a big lesson that I've learned by having multiple sclerosis.
2022 Healthgrades Operating Company, Inc. The content on Healthgrades does not provide medical advice. Always consult a medical provider for diagnosis and treatment. All rights reserved. May not be reproduced
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My Multiple Sclerosis Confession: Dan
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y Multiple Sclerosis Confession: Dan
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I'm Dan, and this is my multiple sclerosis confession. A dramatic experience I had as a result of my multiple sclerosis actually happened just before I was diagnosed. I went to the doctor because my hands and my feet were numb. And when I got to the doctor's office, I felt like I didn't put my sock on correctly and so it felt like I had something bunched up into my shoe. When I went into the exam room, I thought, oh, well, let me take off my shoe and I'll straighten out my sock. Turns out there was a bat in my shoe. It had gotten in there and they can crawl into little holes apparently and I couldn't feel it because my feet were numb. What scares me most about my multiple sclerosis is that I've been living with the disease for 21 years and I have the relapsing-remitting form of the disease.
Now, when I was first diagnosed, they said that after about 10 years living with the disease, you would elevate to a more progressive form of the disease. Well, after 10 years, I felt like I've been living on borrowed time because I feel like I'm still doing okay and I still have relapsing-remitting MS. Not that I think about it all the time, but on some levels, you still feel like I'm waiting for the next shoe to drop because it has been 21 years.
The silver lining of my multiple sclerosis actually is my wife, Jennifer. Jennifer also has multiple sclerosis and we met at an MS event about 18 years ago. And it just truly was love at first sight. And I think that's one of the things--I wouldn't want to have another partner in crime with this disease. They always make fun of us because, oh, you have a built-in support system, and we do but the challenge is when one of us is sick, it makes it really difficult for the other one because we're both living with the disease. But truly, my wife is the silver lining and also the countless other people we've met who are living with the disease. Also, all of the opportunities we've had to travel to speak and just meet other people.
2022 Healthgrades Operating Company, Inc. The content on Healthgrades does not provide medical advice. Always consult a medical provider for diagnosis and treatment. All rights reserved. May not be reproduced
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My Multiple Sclerosis Confession: Jennifer
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My Multiple Sclerosis Confession: Jennifer
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Hi, I'm Jennifer, and this is my multiple sclerosis confession.
A dramatic experience I've had as a result of my multiple sclerosis is that, because of the disease, I'm no longer able to transfer myself into bed. And one day my husband was transferring me at a hotel in Detroit and we fell, actually I fell, and he had to call the Detroit Fire Department to come rescue me and get me into bed.
What scares me the most about my life with multiple sclerosis is that I am getting older. I've had the disease for 23 years and I'm no longer able to do some activities of daily living, like bathing or fixing my hair, or cooking for myself, and I worry about how I'm going to get those things done as I continue to age.
The silver lining of my multiple sclerosis has to be my husband, Dan. He also is living with the disease and we met in an MS function almost 18 years ago, and I cannot imagine living a moment of my life without him. So definitely, he is my silver lining.
2022 Healthgrades Operating Company, Inc. The content on Healthgrades does not provide medical advice. Always consult a medical provider for diagnosis and treatment. All rights reserved. May not be reproduced
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My Multiple Sclerosis Confession: Marni
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My Multiple Sclerosis Confession: Marni
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My name is Marni, and this is my multiple sclerosis confession.
A dramatic experience I've had as a result of my MS has been any time I have a flare-up that regards my eyes, specifically optic neuritis, is when I have blurry vision and I usually have it in one eye. I've had it three times, twice in one eye, once in the other. And every single time it happens, my eyesight gets a little worse and it's not so much my eyesight, but it's the color of what I could see. And it's really scary. I'm not allowed to drive. It changes my normal activity and my normal life and it's really ... it's challenging.
What scares me the most about having MS is really wondering if I'm going to pass this gene to my son, who is currently four years old and not knowing if he's going to get it one day. It wasn't in my family, but an autoimmune disease was, and it's really scary thinking that I might be responsible for something that he's going to have to go through.
The silver lining with having MS, for me, is since I've had it for 14 years, I've really come to be that person that people go to when they know somebody that's newly diagnosed. I'm very open about it. I'm not scared to talk about it. I want people to know that it's an invisible disease and that you could look healthy, but you may not feel well. So through that, I've met so many people, so many women, and I've actually raised a lot of money. I've done walks and bike rides and music events to raise money for the research to help find a cure.
2022 Healthgrades Operating Company, Inc. The content on Healthgrades does not provide medical advice. Always consult a medical provider for diagnosis and treatment. All rights reserved. May not be reproduced
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My Multiple Sclerosis Confession: Joanna
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My Multiple Sclerosis Confession: Joanna
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My name is Joanna and this is my multiple sclerosis confession. One of my main symptoms of my MS is vertigo. When that happens to me, it takes over my whole body. I become paralyzed in my brain and my entire body. I can't move. And I know that the only way to get over it is to lay in bed and rest. It could take a day. It could take a few days. It could take a week. But I know that, as long as I lay down and rest, my body will go back to normal.
What scares me the most about my MS is when my vertigo does come on and I'm not at home, I can't drive. So, there have been situations, especially at work, where it will come on while I'm teaching and I've had to go to the school nurse. And I've had my parents and my husband come get me and drive me home. I also worry about the future. And, because this is such an unpredictable disease, I do not know if I could have other symptoms in the future. And that scares me.
Before I was diagnosed with MS, I would do things like skip breakfast. I would eat a lot of sugar. And I would always feel it. Once I was diagnosed, I knew that I had to eat healthier. I had to start working out and exercising. The silver lining was that I basically made myself more aware of what I need to do in order to stay healthy. And, when I eat healthy, I feel great.
2022 Healthgrades Operating Company, Inc. The content on Healthgrades does not provide medical advice. Always consult a medical provider for diagnosis and treatment. All rights reserved. May not be reproduced
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My Multiple Sclerosis Confession: Alexa
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My Multiple Sclerosis Confession: Alexa
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I'm Alexa and this is my multiple sclerosis confession. A dramatic experience I've had because of multiple sclerosis was recently, I was hiking with a few friends and we got to about halfway through the hike and my left leg, which is affected by MS, started to kind of give out and fatigue, and stiffen up. So I was in a lot of pain and my friend had to find a walking stick to help me complete the hike because we were still in the middle of the woods.
And it was just a really sad and scary moment for me, where I really felt how much MS was affecting me at the time in a way it hadn't before. What scares me the most about having MS when I think about the future is losing mobility, losing the ability to walk and do the things that I love to do like dance and hike, and just have independence and freedom. And thinking about not having that scares me on a daily basis.
The silver lining of having MS is it kind of pulls into hyperfocus what really matters and what's really important, and not taking things for granted. And just knowing that nothing's guaranteed and nothing's promised. And kind of living more mindfully and being more present and finding more gratitude for the things that I still do have. And the support that I have and the access to really good medical help and resources. So there's a lot of silver linings.
2022 Healthgrades Operating Company, Inc. The content on Healthgrades does not provide medical advice. Always consult a medical provider for diagnosis and treatment. All rights reserved. May not be reproduced
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6 Surprising Facts About Multiple Sclerosis
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Learn tips on how to manage your MS.
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Multiple sclerosis affects more than 2.3 million people worldwide, yet there's a lot about it we don't know.
MS is unpredictable and often disabling, but experts aren't exactly sure what causes it. And while treatment can be effective, researchers are still working on a cure.
Number 1: MS interrupts essential communication between your brain and body. MS is a disease where the immune system strips away the protective covering of the body's nerves.
Everything we do from walking to talking is a result of the brain communicating instructions to the rest of the body. This is why people with MS are sometimes unable to walk or control other movements and bodily functions.
Number 2: MS can damage your eyes, but it's rarely permanent. MS harms nerves all over your body, including your optic nerve, which connects your eyes to your brain.
Damage to the optic nerve can lead to blurry vision, color blindness and difficulty with depth perception. Sometimes MS can even cause blindness in one or both eyes. The good news is, MS-related vision problems typically resolve on their own without treatment.
Number 3: MS treatment is holistic and effective. There isn't a cure for MS yet, but most treatment plans tackle the disease from all angles.
Your doctor will prescribe medications to help you keep MS from progressing quickly, recover from flare-ups, and aid in managing symptoms like pain, stiffness, fatigue, or depression. And a physical therapist can help you stretch and strengthen your muscles, and show you strategies for performing daily tasks.
Number 4: it's easy to find the right doctor to treat multiple sclerosis at Healthgrades. By using Healthgrades' Guided Physician Search, it's easy to find a doctor who's the best fit for you and your MS.
Number 5: music therapy can help with MS. Music therapy teaches you to match your body's actions with a rhythm, and it can also help improve coordination, endurance, concentration and memory. In addition, this type of therapy gives you tools for coping with fear, stress, and depression.
Number 6: vitamin D may help you manage MS. A low vitamin D level has been associated with more frequent and severe MS flare-ups, and research suggests that people with a healthy level of vitamin D might experience fewer MS symptoms. So try getting more sun and eating fatty fish to increase your vitamin D levels.
And don't forget, you can find the right doctor to treat your MS at Healthgrades.
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