How to Make a ‘You’ve Got This’ Video:
• Be a YouTube member. In order to upload your video, you must have or create a valid YouTube account.
• Make sure the sound on your video is clear. If no one can hear you, no one will watch it. Make sure to shoot in quiet environments and to project.
• Don’t backlight. Make sure light is on your face and not behind you (i.e. don’t sit in front of a bright window).
• Title your video. Use the title “You’ve Got This” and include your name and location (ex: “You’ve Got This: Tracy from Michigan”).
• Tag your video. Use tags to describe your video so that other people can find it (ex: “New to MS” or “Help with MS Symptoms”).
• Keep it short. Three minutes max.
• Include a caption script. If you can, submit a transcript of your video as a caption file on YouTube. This will help to make sure that your video is accessible to deaf and hard-of-hearing individuals, as well as those who use Google Translate.
1) Keep it positive! The main goal of your video should be to inspire hope and provide useful advice to the recently diagnosed.
2) Be yourself. Speak from the heart.
3) How did you feel when you were first diagnosed? Were some of your fears unreasonable? What helped you learn to cope?
Healthline may discontinue or decline to share video or written content submissions for reasons including, but not limited to:
• the video contains offensive, vulgar, or violent content
• the video contains incorrect medical information
• the quality of the video is poor
• you cannot host advertisements on your video
• the video mentions brand names of drugs
If Healthline has discontinued or declined to share your video, yet you feel that doing so was inconsistent with the policy set forth above, please contact Healthline at [email protected] with an explanation as to why you believe Healthline acted in error. Any such communications will be evaluated by Healthline and addressed promptly.
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You’ve Got This’ supports the Bipolar community. View the videos from Bipolar sufferers encouraging those with Bipolar to know they are not alone and that they’ve ‘got this’.
Hi, I’m Dan Digmann and I’m Jennifer Digmann. Believe it or not, both Dan and I are living with Multiple Sclerosis.
Dan: I was diagnosed with MS when I was 27 years old back in 2000.
Jennifer: And in 1997, when I was 23, I received my MS diagnosis.
Dan: We both remember what that was like when our first diagnosis. How scary that was of how we would move forward with an unpredictable disease like MS.
Jennifer: And as strange and peculiar as this sounds, I think my life really started after my diagnosis. I met and married Dan in 2005.
Dan: I ran my first 8K race in 2009.
Jennifer: I earned my graduate degree just last year.
Dan: And in 2011, we wrote our first book and, within our book, one of the points we stress was when you’re living with a disease like MS. Be your own best advocate because nobody knows your situation better than you.
Jennifer: And remember that knowledge is power. Be informed and educated. Use online resources, like Healthline.com or use your neurologist or a resource like the National MS Society.
Dan: And the other thing is keep everything in perspective. We’ll have bad days with MS, but the reality is everybody has bad days whether or not they have this disease.
Jennifer: And support is so important. Whether it be from your family, your friends, a support group, just make sure that you find someone to talk to about life with this disease.
Dan: And it’s through that support you realize that you’re not facing this disease alone and that can help you through anything this disease is throwing at you.
Jennifer: And both Dan and I with you the best on your journey with MS.
Hi. My name is Matt. I am 23 years old and I have Multiple Sclerosis. I was diagnosed when I was 20 and a lot of people are shocked to hear that because I was so young and I am a male. Usually that just doesn’t happen. It’s usually women in their 30’s people say. So, that was a little bit shocking even for me to think, ‘Oh, I’ve got MS, but I sure didn’t have MS. This happens to other people who are older, this happens to women’, but no, this happens to people of all ages. I have Relapsing Remitting MS.
At one point, for the longest time, it was pretty, it was fine. It was just sensory and visual issues that I was dealing with, but it made me more active. I went on hikes, I rode motorcycles, I was just more active in life, so it wasn’t so mad. But I have an aggressive case of MS, so it eventually moved to my spine, affected all sorts of motor functions, it really screwed me up. I was in a wheelchair for a while. I remember going to see my neurologist at the time and I asked her, ‘What do I do to get out of this wheelchair? What’s the next thing?’ And she said, ‘Well, you’re just going to have to get used to it. This is the course of the disease.’ And I was like, ‘Um, no, I’m 21 years old. I’m not ready to accept the fact that I’m going to be in a wheelchair for the rest of my life.’ So, rather than just accepting her opinion as concrete fact, I went around and started looking for different doctors and I finally found a guy who put me on Tysabri and with his treatment and everything, I am now, I’ve traveled the world, I can walk miles and miles and miles, I can do small, little hikes again. I am hoping, with physical therapy, that by the end of the year, I will be able to do a light jog if not a run.
So, my advice is learn as much as you can and don’t just accept the word of one doctor as concrete fact. Get as many different opinions as you can until you feel satisfied. Don’t just accept and give up. You’ve got to be proactive. The other thing I need to emphasize is you’ll look up on YouTube and read all sorts of different blogs about different people with MS and their experiences and what you have to understand is MS is like snowflakes. Each individual case of MS is different. No two are the same. So, as cheesy as that is, it’s true. What I’ve gone through, you’re probably not going to go through. And vice versa. No two people go through the same exact course. Don’t let that scare you. Educate yourself. Learn, learn, learn. If you’re going to live with this disease for the rest of your live or however long it takes to find a cure, you might as well know more about it than anybody else because you have a vested interest in it. With that, I wish you good luck.
If you were diagnosed with Multiple Sclerosis, I kind of get what that was like. I was diagnosed in 1988 and it was a very different time. And while there is no good time to be diagnosed with MS, now is specifically a much more hopeful time. Back then, we didn’t have the internet and we didn’t any kind of disease-modifying drug. And there really wasn’t much understanding about the disease. At the time of my diagnosis, they pretty much said don’t get heated or stressed out, so that’s really all I had to go on.
So, if you’re going through the process of trying to learn about your MS, it’s really hard, it’s very stressful because there are so many possibilities and you don’t know what’s going to happen to you and that uncertainty can bring about a lot of anxiety. So, my recommendation is to go slow and understand that whatever your experience is or will be is different from everyone else’s. So, if you go online and learn about all the possibilities, these things may never affect you. And I think that’s important. Everybody has a different disease course and different symptoms they have to deal with. So, there is a lot of reason to be optimistic now, there is a lot of hope with the medical community’s greater understanding and with many, many medications and treatments available to treat the disease and slow its progress.
So, go slowly while you’re trying to learn. I recommend the National MS Society site. They have basic facts and a section for the newly diagnosed. Also, while you’re online, check out mssoftserve.org. It’s a non-profit organization that is raising funds now to create a customizable learning web space, so that people, when they are going through this, can learn about their version of the disease when they want to learn it, how they want to learn it, and what they want to learn about. It’s going to be a very, very important tool for people learning about this diagnosis. I think we’ve got a lot of optimism here and I wish you all the luck in coping. You can also email me. I’m a great mentor. It’s [email protected] Be well.
Hi there. My name is Christie and I’ve been living with Multiple Sclerosis since the year 2010. I wanted to say hi to you and to say I’m very sorry to hear that you are newly diagnosed with Multiple Sclerosis, or MS, as we all call it. It’s a little bit shorter and easier to say MS than Multiple Sclerosis. I always get tongue-tied along the way.
I thought it might be helpful for me to kind of have a quick chat with you all to sort of let you know the four-pronged approach that I took to help me get through the first years of living with Multiple Sclerosis. The first thing that I did was gather as much information as I possibly could. I’m a data geek, but I’m also very, very interested in knowing how Multiple Sclerosis works for me and how life will be with the lesions that are sitting along my spinal cord. So I gathered and gathered and I read and I read and I researched and I researched.
The very second thing that I did was start treatment immediately. For me, this was very important because my main goal was to slow down the progression of Multiple Sclerosis, so I started straightaway, within a month of diagnosis.
The third thing that I did was look for support. My friends and family were there for me all through the four years, hugging me along the way, and I’m so very, very lucky. Kisses to you. But also looking for support from people who aren’t living with Multiple Sclerosis can be challenging because they don’t know exactly how you feel. Am I right? I think you can all relate to that. So, I think it really, really helped me to start making friends in the online world and making friends with people who live with Multiple Sclerosis and share similar experiences like I do. What does it mean to have pins and needles? You could say that and you could describe it to someone who doesn’t have it but somebody who does have it might be able to squeeze you little harder with that hug.
And the fourth thing I did in my first years of living with Multiple Sclerosis, but also what I do today, and that is I really try to do something that I love. And it makes me feel better when I do something every day that gives me a bit of pleasure that makes living through life with Multiple Sclerosis a little bit more tolerable. I can’t encourage you and I can’t invite you enough to do those small things in life that make you feel good. It could be watching your favorite movie, it could be riding a bicycle like me, it could be gardening, it could be jumping off the stratosphere like I did last year, what a rush! But you get the gist, so with you that, I bid you farewell and I give you a hug from over here in sunny San Diego and I wish you luck. You’ve got this.
Hi. My name is Tresa Miller and I have Relapsing Remitting Multiple Sclerosis, but it doesn’t have me. I was diagnosed in 1997 with RRMS and it flipped my life upside down like a lot of you that will be watching this video, but we decided to become educated patients. I found a physician that I love. I built a team around of people that gave me a soft place to fall and I started on a disease-modifying drug within six months of my diagnosis.
I’m proud to say that 17 years later, I’m still on that drug, I’m 100% compliant, I’ve never missed a day or a shot, I take good care of myself and I know that there is life after the diagnosis. You’ll be fine. Just build that team, do the work, take the drugs, the National Multiple Sclerosis says you must do three things: find a drug, pick it, and stick to it. And I’ve done that very thing. Good luck
Hey everybody. My name is Matt Cavallo. I’m 37 years old. I live in Chama, Arizona. I’ve also been living with Multiple Sclerosis for the past eight and a half years. I was diagnosed at 28 years old. My initial onset of symptoms was that I was numb from the waist down, I couldn’t walk or go to the bathroom on my own. And as I laid in my hospital bed, I was afraid. I didn’t know why this was happening to me. I’d always been a big, strong, healthy guy and seemingly overnight, I lost my ability to walk or go to the bathroom or do any of the simple things that I had taken for granted all this time. When they told me I had Multiple Sclerosis, that was a shock to my system. My Aunt Loretta had it in the ‘70’s, she died in 1981, when I was only four years old. My only living memories of her was that she couldn’t walk, she was in a wheelchair, and she couldn’t talk. She could only mumble and moan. So, at 28 years old, when I was first diagnosed, I’m thinking, ‘That’s my fate.’
Eight and a half years later, I’m happy to tell you that wasn’t my fate. In the years that had passed, since my Aunt Loretta had MS, there have been tons of major changes. In the ‘90’s they first came up with some treatments, in 2005, they had some treatments I was eligible for, and now in 2014, there are a lot more options than I ever dreamed possible. It’s all about being an educated patient. If I could talk to myself back in 2005, I’d say, ‘Matt, hang in there. Learn as much as you can. Check out all the resources that are available. And just never give up. There’s a lot of great stuff happening in this field right now and if you just stick in there and fight, you can do it.’ You can be like me. Today, I’m still working, I’m still married, and I have two beautiful boys and I’m being the dad I always wanted to be. In my darkest hours of my diagnosis, I never thought this was possible and today I’m living the life that I always dreamed. And if you’re like me and you don’t give up and you hang in there, good things will happen to you, too. Okay. Just fight it and know that in 2014, there is more that they can do for a person living with MS than ever before. Just try to be an educated patient, be your own advocate, and hang in there. And, I’ll be there in the struggle with you.
Hi. My name is Cathy Chester and I was diagnosed with Multiple Sclerosis back in 1987. My diagnosis went pretty quickly. I had great numbness, I was unable to walk very well, I looked drunk, and I had great fatigue, and anyway. So, after I was diagnosed, I decided that there were two ways I could look at this and my choice was to be positive about my illness. So, I did everything that I could to research whatever there was available at the time about MS and what I found out was that I needed to take stress out of my life, and you’re thinking, ‘Yeah, right.’ But it’s true. So, I got rid of all the negative energy in my life and I went forward. I ended up marrying the man that I was dating when I was diagnosed and 25 years later, we do have a happy marriage, we have a wonderful son, and my life is very full because it was my choice to be mindful of every gift, every blessing that I have, to think positive thoughts, to deal with my issues through knowledge, reading, through discussing, family, support groups, physicians, and to just know that what I have, MS, is a very small part of who I am as a person. It is not the total sum of who I am.
We all matter and we all add great value to the world. In the minute before we were diagnosed to the minute after we were diagnosed, we are the same person, the same exact person that we were. So, here we are and we have choices. I would say to be positive, to stay active both socially, physically, and to do all you can in your life to follow your passions and have a good, quality, satisfying life because it is possible with MS. It is not all of who you are. You can do it. Just like me. Thank you.
My name is Nicole Lemelle and I’m here because I have Multiple Sclerosis. As a matter of fact, I’ve had it since 2000, so it’s been 14 years living with MS. For the first nine years, you only knew I had it because I told you I had it. Then, after that, I developed a limp. The limp just progressively got worse and worse and worse. But, you know, the important thing is that it’s so different with everybody. The way I look might not be the way you look. Your symptoms may be different than mine. That’s so important. It took me a long time to realize that, it really did. It was probably one of the hardest things with MS, besides the fact that I can’t walk, I can’t drive, I can barely write, it was hard that I felt like I was living this life, living this disease by myself. But you’re not. You have a support system out there online and in the magazines and the MS support groups, which I’ll go to tonight. Those are heaven-sent. Those have changed my life. Those have made me want to go on however I can move, be it;well I was going to say crawling, but I can’t crawl anymore either, so, however you can. It makes me want to be me. It makes me want to do things like this video because I want you to know that it’s not over. This is only the new beginning of your life with MS. You can have a life with MS. It may be different than it’s ever been. You may not even recognize who you are, but it’s going to be your life. Own that. You can do this.
Hi. My name is Jeri and I have Relapsing MS. I was diagnosed in 1999 and that means I’ve had it for about 15 years now. To look at me, you wouldn’t know I have it because my symptoms are very mild, but there was a time when I was flat on my back in bed and miserable because I was having relapse after relapse and it just seemed like it was unrelenting. I had three to four relapses a year for the first eight years of my disease. And by the end of the eighth year, I was miserable and I decided I needed a change and that’s when I became proactive about my disease. I found a different doctor. I got into a clinical trial for one of the pill forms of treatment for MS and my whole life changed. Just from deciding to take charge.
I guess that’s my biggest tip to you is to take charge of your MS and don’t let others make decisions for you. My original neurologist was the one that put me on a medication that didn’t work for me and I trusted him so I spent the first eight years relapsing. When I look back on it now, I wonder if that would have been different if I could have gotten on a different medication but because he insisted that it was working for me and I shouldn’t switch, I trusted him, I just gave him control of my disease and I was miserable.
So, what I learned from that is that you have to take charge of your own MS and find a doctor that you trust and someone you can talk to and someone who listens to you because if your doctor doesn’t listen to you, then you need to find a different doctor. Everyone’s disease is different and how a disease is managed should be different for each person based on their needs and how their disease is affecting them. No size fits all and no doctor should treat you like that. So, just hang in there and you’ve got this and be proactive. Take charge of your disease and learn about MS. That’s my tip for you.
Hi. I’m Sheryl Skutelsky and this is Peanut Skutelsky, who has her own Facebook page because she is the MS mascot for my Fix MS Now. And we are here to tell you that you’ve got this. I’ve been diagnosed since 2001 and I personally have found that knowledge is power and there is no doubt that if you come from a place of, not from fear but from care, and you educate yourself, this is not really a difficult course. Because I’ve found, yes when I was first out there back then, there were very few doctors that understood MS and I went from doctor to doctor and I went from bad day to bad day and it was frustrating back then. And matter of fact, I had a friend that used to say to me, ‘What hurts today?’ She didn’t say, ‘Does your left ear hurt?’ because maybe she was looking to find some part of my body that didn’t hurt. And after going from doctor to doctor, it took me a long time to actually find a neurologist that could actually tell me, ‘Yes. It’s not all in your head. There really is something going on in your head. It’s called MS.’
But over the years, I’ve learned that if I come from a place of understanding and not from a place of fear, I can make MS actually work for me. Because once you understand and you have people behind you that understand and once you have a community that you can talk to and share with, which is why I set up Fix MS Now on Facebook, you start to realize that you can do anything you want. There are bad days, I’m not going to lie, but every day you wake up, MS teaches you that today can be anything you want to make of it and if today is a bad day, there is always tomorrow. And MS has helped me to actually realize my dreams. There was a time when I just went through my life just rushing through and I always wanted to be a writer and I always wanted to actually speak and teach, but I had a family and kids, and the things that all of us have to do deal with and I did a lot of things because I had to do them, but because of MS, I’ve had to slow down. I had no choice. And I’ve also had to learn that every day that I wake up, a lot of it is in my head, it’s my attitude. Yes, I have MS and that truly is in my head and that was a relief to find out that what I have has a name, but I found out that my attitude makes all the difference. So, I took the MS and I decided to do something with it.
I was a graphic designer by trade, so I had the experience of social media and networking, and so I started to speak out about MS and I use this beautiful little puppy because most people out there are dog-lovers, in one form or another, animal-lovers and reached out and realized that I can make my dreams happen with MS. So, if you take MS and you stop and realize that every day is a gift and if you stop a realize that you can do something that you might not be able to do tomorrow, then you start to live life and enjoy it a little more. And that is the one that I would say to you is if you could realize that knowledge is power and come from a place where you can choose, you can say okay, there are some things I can’t control, but the one thing you can control is your attitude and what you want to do with your day when you wake up in the morning and make the best of it. Look for the opportunities;look for the good things in life. Then I can truly say to you, you’ve got this and mean it.
Hi, I’m Lisa Dasis and I have Multiple Sclerosis and I was finally diagnosed in 2004 after a 10 year history of symptoms coming and going and a lot of different diagnoses. An MRI that evoked potential was my final test (0:16 Inaudible)
My history with MS has been an up and down one but what I have found, besides the treatments that my doctor has ordered, along with Vitamin D, is that I have changed the way that I eat. I’m eating healthier, I’m exercising on a daily basis, I’m getting plenty of fresh air and getting into the sunshine as much as possible. And that has truly helped me. I know you’ve got this so I’m wishing you to think outside that box, do what you can do to improve your life because it will pay off for you in the long run.
Good Morning. My name is Faith Lare and I have MS. I would like to give a little bit of advice to new MS diagnosed people out there and my best advice is an absolutely wonderful support team. You need everything from being comfortable with your doctor, accepting what he tells you, and a support team also would include your family, friends, and I have joined some groups, then I had recently started my own group with a co-admin, her name is Jen Basychristowsky. She is not a newly diagnosed. She has had it for three plus years. I believe that support is the most important thing because with RRMS, you kind of go day to day. You never know what kind of day you’re going to have, what symptoms will arise and what kind of support you’re going to need, so anyone interested in the Philadelphia, Pennsylvania, New Jersey and surrounding areas is more than welcome to join us at MSers in Philly Plus. I do have some outside of the Pennsylvania area whom I’ve built a relationship with and that’s a wonderful thing. To have friends from all over who go through the same things you go through on a daily basis.
When I was first diagnosed, I was put on a medication that was a three times a week injectible, I went into a relapse from it and now have been switched to Tedfidera twice a day pill. It’s the best thing that could have happened. No more shots, Yay! That’s like the best in the world.
Also, March is MS Awareness Month, I’m going to be doing the walk in May, as far as March goes, I’m making my group MSAware, so if you’d like to join us you can contact us, either me or Jennifer, and we will certainly allow you to join our group. Well, I don’t have much time left, so my love and hugs to everybody out there. If you want to join us, you’re more than welcome. I hope that everybody finds the support that they need because that’s the most important thing, in my opinion.
Also, my main symptom is fatigue, I was diagnosed in 2011 after many years of symptoms that became disabling. I’ve got to go now because I have to take my meds, so I will talk to you all later. Have a wonderful day and love and hugs to all.
Hi, My name is Vern and I’m from Iowa. I’ve had Relapsing Remitting MS for 16 years. This month, I turned 50, so I was 34 when I was diagnosed. To tell you how much I did not know about MS when I was diagnosed, when my neurologist asked me if I wanted a shot once a day or once a week, I said, ‘What? For a week or two or a month or two until it clears up?’ That’s how much I didn’t know about MS. You hear the phrase ‘knowledge is power.’ That’s more than a cliché because the more you know about MS, the better you are able to deal with the changing aspects of the disease.
Yes, my life has changed dramatically. I no longer have a career in radio, but despite those changes, you know it does change your life, but those changes don’t have to be bad. For example, I’ve found out that I had the strength I didn’t think I had to deal with a chronic disease and the ever-changing aspects of that chronic disease. And other aspects of life. I rely on my faith. That has gotten me through a lot where I didn’t think I had the strength to deal with it, but I do now.
Since I was diagnosed, I wrote and published a book. I have a wonderful wife that gets MS because she gets me and that I’m thankful for and if you rely on others, they’ll be there for you through social networking, on the internet, YouTube, this site, Facebook. Rely on that. It gives me strength and allows me to get through things that I didn’t think I could get through.
For newly diagnosed, let me tell you it’s not as bad as what you may think right now. Keep a positive attitude and you can prosper, despite having MS. It may be different than what you thought your life would be, but you can prosper. It’s not impossible. Keep a positive attitude and never give up.
Hi, my name is Aileen and yes, these days I do tend to lean a lot, ha-ha. I’ve been diagnosed with MS, or Multiple Sclerosis, for about 13 years. First, it was quite overwhelming and scary, of course. I felt all those things, but, you know, I knew that there were people in my life who just absolutely could not live without me so you fight and you find things to laugh at. And that, to me, is the best way to get through things is humor.
The most important thing I find is to know how MS is affecting you specifically. Having MS is different for everyone. It is unpredictable, so you need to be prepared for that, so that is why having a sense of humor is probably the biggest thing that I would advise. Keep up on the new information and we have so much going on in the community these days, in the medical world, science is ever-changing and there are so many things that are here for us today that were not here for us even 13 years ago. So, I just want to say good luck and hello and as much as it stinks, welcome to the MS world. We got this, right!
Hi there. My name is Yvonne Decelis and I’m just here to give you my story about when I was diagnosed with Relapsing Remitting MS. If you are a newly diagnosed patient, first off, let me just tell you I’m very sorry. When I first found out I had MS, I was very upset and very angry and I felt that way for about two years. But that was a long time ago. That was back in 1994. Since then, a lot has happened. One thing I did figure out is I’m pretty sure I was born with it. I’ve had a lot of problems all my life. But I’ve also discovered a lot of inner strength that I didn’t know I had. I go to the gym, I quit smoking, I’m probably in better shape now than I was when I was 16 and I’m in my 40’s. So, you got this, trust me, it’s not as bad as it sounds.
And on that note, just want to quickly let you know I just published my first book. It’s called, ‘It’s Not As Bad As It Sounds-My Life with MS and Fibro’. Please don’t let the title offend. I know that when you feel sick, it’s every bit as bad as it sounds, but I chose that title because I wanted to show a message of perseverance and positive thinking. And I’m sure you’re probably sick of hearing that phrase from people. I know we have it bad, trust me, I know we do. But again, it could be worse. Finding out you have MS is not like getting a death sentence. It is extremely rare for MS to lead to fatality. Anyway again, you’ve got this. Trust me and if you’ve got any questions about my book, just send me an email at [email protected] Thanks so much for your time.
Good Morning and girl with MS here. A lot of people have asked me about what it felt like when I first diagnosed with MS and what it was like. Because a lot of times, people see me today and they think, ‘What’s the matter? You look fine. You look great, in fact.’ MS is often the invisible disease because sometimes you don’t see it. To me, it’s a little visual now because I’ve picked up some tremors sometimes that become more exacerbated. Sometimes I need a cane for balance. My balance got a little wonky there for a while.
What really happened was, it’s been 13 years, I actually can’t believe it’s been that long, but it’s been 13 years since it hit me really hard. I was traveling through Guatemala with a few friends, basically going across country, we had a map, backpack stuff, suitcases, things, we just traveled all over. It was a great time. But during that time, I just got sicker and sicker. I didn’t know what was happening. I started losing my balance, my vision totally went cat-eye, like vertigo and spinning, and there was a crab, one day in my room, I’ll never forget this, poor little crab was on my day-pack, my backpack that didn’t belong there, but here I am standing in a chair just watching this thing spin around and I’m like, ‘Oh man, get out of my bag, get out of my room.’ He finally did, I’m sure he did by now. Interesting, the people of Guatemala, I was so sick, I really couldn’t walk much unassisted. I looked like I was just constantly drunk and on drugs. I looked terrible. The people there were so nice. They would come and get me, various friends I made there along the way, they would come and get me and take me inland where I could have a liquado which is what I could keep down, sort of liquids, coffee, it started affecting my diet a lot. I definitely felt like I was constantly seasick except that I wasn’t, I was a little nauseous, but it was more just certain smells would set me off. I remember the coffee fields, the fermenting coffee fields, that was a good one on me. But by the time I got home, I, in fact, the airport was pretty funny because I was coming back on the airport, and it was the year the Johnny Depp movie Chocolat came out, and everyone wanted Guatemalan chocolate. So of course, I told my mother I would get some and I’m walking through the airport just hand over hand, I’m trying to hold myself up, I’m by myself, I don’t know what’s wrong, I don’t feel sick per se, things were just out of whack. I can’t get out of this three martini whirlwind and I’ve had nothing to drink, maybe a four martini, I mean it was bad. Trying to use my horrible Spanglish and trying to ask this lady for some chocolate and all she could say was, ‘Oh Americanos, locos.’ I’m like, ‘I’m not crazy.’ Or what did she say? ‘Drugos.’ I was like ‘No, there’s something wrong.’
So, I get home and finally get to a neurologist several weeks later and get the diagnosis. I didn’t know anything about the disease, to be honest. My cousin was diagnosed just three months before me and I really didn’t know any, oh two months, oh loud sound, two months before me. So, I didn’t know anything about it. I had a lot to learn and I’ve learned a lot over the years. The number one question I asked was, ‘Is it going to kill me?’ And they said no. And I said, ‘Okay, then bring it on. I can take it, I can deal with it. Let’s do this.’ So, from then on, I hit it with a positive attitude.
That’s a big difference, to be honest, than when someone says, ‘No, you have months to live.’ I can’t even imagine what that’s like. But with MS, we may have a lot of issues and people do die of the disease, but right now, we have a lot of options to help us manage this. Hey, I’m going to end this because I just can’t stand this sound. So, this is my little beginning of what it was first like being introduced to MS. Okay, I’m wanting that quite, serene moment back. Just bring it back. Quiet, serene moment. And we’ll catch you all later.
You’ve got this. You know, the news that you have Multiple Sclerosis. But now that you’ve got this, what do you do with it? Hi, I’m Laura Koloskowsky and I’ve got this, too. I was diagnosed with MS in 2008 after my neurologist suggested I was really too old to be showing up with MS. Hearing you’ve got this can rock your world and suddenly the future you might have envisioned is filled with questions and doubts. I want you to know you’re not alone.
All of us have had those same seismic rumblings, so what should you do first now that you’ve got this? How about a deep breath because MS is almost always slow moving and you have plenty of time ahead of you. There’s actually enough time to take several deep breaths. And then begin to learn what you can about living with MS. There’s a lot of information out there and most of us turn to the internet. That’s exactly how you found me here now, right? So, there’s a lot of good, solid information, but unfortunately, there is a lot of questionable material as well. I would like you to go slow with all this information. I know you’ll want to know everything right away, but don’t, don’t bite off more than you can possibly digest. It can be overwhelming to read and read and then read some more and having all these new medical terms bombarding you. Read a little, stop and think about what you’ve just read and then go back and read it again to make sure you really understand it before moving on. Chew slowly on all that knowledge so you really do digest it. As you research, and I know you will because we all do it, do it through reputable sources, such as Healthline, the National Multiple Sclerosis Society, or the other MS organizations like MS Foundation or the MS Association of America. Each one of them serves a different role in educating and supporting us and can be trusted for accurate information. Check out some blogs written by people with MS, too. I blog regularly and share my personal experiences, thoughts, and knowledge freely. There are many quality bloggers online and I hope you will find one that you can relate to, that writes in a style that you like and you will read regularly. We like sharing and learn so much from each other.
Along with all this reading and learning, I really want you to do your best to be kind to yourself. Allow yourself to be mad or to be frightened, or angry, but then don’t be angry with yourself when that happens. Allow yourself time to take long walks, get lost in a good book, or curl up in front of the TV with a bowl of popcorn, or even eat that big box of chocolate by yourself. It’s hard to unwind and do any of this while facing the crisis of MS, but you really do need to take that mental break from thinking about MS 24⁄7. I tell everyone I believe that it takes at least a year, that’s 365 days. That’s a long time to begin to understand what living with Multiple Sclerosis really means. How we find a way to coexist with it and get on with our daily lives.
Others here have told you about the importance of assembling a good medical team and even more important the benefit of connecting with others who also have MS, be it in person or online. Please take their advice to heart, it’s all good stuff. There’s a lot more I could share with you, but you know, you’ve got it here, the basics at least. Learn what you can, take it slow, you have plenty of time, be discerning about where you get your information from, be kind and patient with yourself and this is big news. It takes time to figure it out. If you can put these ideas into daily practice, I really believe and I know, you’ve got this.
Hi. My name is Julia Saltzer and I have a form of MS called Relapsing Remissive MS, or RRMS. I believe I’ve had it for over 30 years, but I wasn’t diagnosed until 1995. Doctors said that I was in a form of denial. I think it’s because I’m stubborn and I’m a fighter. If I was going to give some advice to somebody that’s just newly diagnosed, I would probably tell them find a doctor that you’re comfortable with. Find a good doctor, a good neurologist, even if it takes going to the second, third, or fourth doctor. It doesn’t matter. Get out there and get a doctor that you’re comfortable with. Second thing would probably be get good information, get educated. Get out there because it’s on the internet. Nowadays, we’ve got it. We’ve got good organizations, we’ve got Facebook, we’ve got Twitter, try to have a positive attitude. I know you can’t always have a positive attitude but do try to stay positive about this.
It is definitely a rollercoaster ride. You never know what’s going to happen, it’s got its ups and downs, but do try to stay positive about it. This is not an easy thing to go through. I’ve had multiple surgeries, eye surgeries, I’ve fallen, I’ve had broken bones, but there is good information and bad information on the internet but try to get out there and get the information. Some people say there’s diets, some people say there’s a cure. Right now, we don’t have a cure, but I think in the future, we will have a cure. Get out there. Get informed. I have Facebook, get out there and get on my Facebook. Thank you.
Hi, I’m Ann Pietrangelo. I was diagnosed with Relapsing Remitting MS in 2004 and it’s been a decade of real highs and lows. Early on, my husband and I decided we weren’t going to be passive about MS. We decided we were going to make whatever adjustments were necessary and we were going to learn to be flexible. If you’re newly diagnosed with MS, you’ve probably already realized that it’s a very unpredictable disease and when you live with MS, sometimes your plans change. That’s okay. It doesn’t mean you’re giving in to MS, in fact, it means you’re taking control over your life, making the adjustments you need so you can continue to live a full life. Sure I’ve had my share of difficult times in the past decade, but I’ve also had some amazing opportunities and even managed to fulfill a few dreams.
That’s my story and it’s not necessarily your story because we’re all a bit different. But if you are newly diagnosed with MS, there are few things you can do to take charge of your life. Number one, self educate. That means using reputable sources to get the information you need to make important decisions about your healthcare and your life. Be a partner with your healthcare team. Second, reach out to other people with MS. Not that their MS is going to be the same as yours, of course, but other people with MS can share valuable insights and we can help each other. And number three, live. As overwhelming as life with MS can feel sometimes, and it really can, you can’t become all about MS. You’ve got to live. Don’t let yourself get stuck in place. Identify your personal strengths and use them to your best advantage.
I’m not going to tell you that it’ll be easy or a challenge or that a positive attitude is the answer to everything, although it does help. Life’s a bit more complicated than that. But I will tell you that there is life after an MS diagnosis. It may be a little different or a whole lot different than the life you had before, but the only way to face it is head-on. You’ve got a life to live. You’ve got this.
Hi, my name is Antoinette. I was diagnosed with Multiple Sclerosis in 2009. After about 10 years of many misdiagnoses, I woke up one morning, I had no feeling on my right side, it was difficult to hear out of my right ear, and I also had double-vision. I ended up seeing my primary doctor, which he did an MRI. The MRI of the brain came back with demyelination. He said, ‘It’s possible that you have Multiple Sclerosis, but I’m going to send you to a neurologist to check to see further.’ So the neurologist did a spinal MRI. The spinal MRI showed demyelination also, so the neurologist decided, ‘I’m going to do a lumbar puncture.’ So, I had the lumbar puncture done. The test came back and with the combination of my symptoms plus the MRI results, plus the lumber puncture, it was decided that yes, I did have Relapsing Remitting Multiple Sclerosis. I started on a medication or injections for the Multiple Sclerosis. I also take plenty of medications for the symptoms that I have, which include peripheral neuropathy, trigeminal neuralgia, and the MS chest tug, which is something that we all hate. Anyway, try to keep moving as much as you can. Do what you can when you can and smile because that is free.
Hi, I’m Theresa. I have known that I have MS for almost 25 years and when I found out that I had MS, I was scared. At first, I didn’t even know what it was and so I decided to find out everything I knew about it. One of the things that you have going for you is that you have the internet available to you and there is a lot of good information, but go in with an open mind, but also know that not everything you read on the internet is necessarily true.
Everybody that has MS has their own unique experience, but my advice to a newly diagnosed person is just keep a positive mental attitude. Whatever it is that you have a dream for in your life, it’s not lost just because you have MS. I have been a teacher for over 20 years, I teach full-time. I also am working on my Master’s Degree in Counseling and that’s been a journey that’s taken longer than I planned but I can see the end in sight and I’m very excited about what the future holds. Having MS is just one small part of my life, it’s not taken over my life, so I would definitely encourage you and remind you to have a positive mental attitude.
Hi, my name is Danielle Sciocchetti. I am 44 years old and I was diagnosed 11 years ago with relapsing-remitting MS. When I was diagnosed, I was absolutely horrified. I didn’t know a lot-I knew nothing actually about MS. I didn’t know anyone who had MS, I had no one as a reference point. My diagnosis came quickly. I basically went from being fine to being bed-ridden on IV steroid treatments in the space of a week. I had double vision, I couldn’t walk, I had optic neuritis, I had tingling, you name it, I had it. The most important thing, at that time, was getting to a neurologist who was positive on the prognosis of my diagnosis.
There are a lot of treatments out there that were not available years ago. It’s really important that you have a doctor who understands all of the various treatments, how they will fit into your lifestyle if you do decide to go on one of these treatments, and who has a positive outlook on the disease. MS is not a death sentence. You can’t let it rule you. You can’t be the person who lives your life as ‘the person with MS’. That brings me to my second point-I think it’s really important to stay active. It is so super important. As active as you can be. You may have some limitations, you may not. I have been fortunate, I don’t. If you do, work within your limitations but don’t stop being active. I’m currently playing roller-derby, I’m doing off-skate workouts, I’m more active now than I’ve ever been and I think it’s really helped me along in these 11 years to keep me mentally and physically just active and moving.
I also think it’s really important to have a strong community of people around you who will support you because you will have moments of being down. It’s not like everything is roses for me. I definitely have my moments of being upset, and being scared, and being nervous and I have a community that I can go to, you know, I have family, I have friends and I think it’s super important to have people that are positive.
So, the most important thing again is to get to neurologist who understands all of the medications that you can take and is positive on the prognosis. Also, the most important thing to me was staying active. I can’t stress that enough. Stay as active as you can. You don’t know what’s going to happen down the line-it may be nothing or maybe you will not be able to do some things you can do now. So, if you can do them, go for it, do them. And the third thing, just build a strong community of people around you to support you. You know, you have MS;MS does not have you. You control you, you control your life, stay positive, stay strong, build your community, stay active, and you’ve got this. You’ve got this. Trust me, trust me, trust me.
Hi, my name is Ashley Ringstaff. You’re probably watching this right now because you have been diagnosed with Multiple Sclerosis, or MS, and there are probably a lot of emotions you’re going through right now. I know because I went through those when I was diagnosed in August 2010. I was 22 years old and I am now 26. I live right outside of Austin, Texas. There is all those emotions, all those mixed emotions of what you’re feeling. It’s okay to feel those. I was very confused because I didn’t know what MS was but then I was relieved, in a way, because I had answers to why my face was going numb. It was taking about a year to get my diagnosis.
So, it’s going to be okay. I know it’s all new to take in and what I would highly recommend is really getting a good support group to back you and things like that. When I was first diagnosed, I was thinking, ‘Okay, I want to talk to some people who know what it’s like to have MS, I want to talk to others who have MS,’ but I was really scared to go to a local meeting because I’m 22 years old and everything I’m hearing is that, ‘Okay, you can end up in a wheelchair.’ So, I didn’t want to go see what I could be like in the future, so I did look online and I found MSWorld.org. It has message boards and chat rooms and I’m actually a volunteer for them now, and a patient advocate. I’m very glad I found them. I think I’d still be very upset and depressed, in a way, had I not found that good support group. I have made lifelong friendships with people I’ve met through MSWorld that have MS and you just create that very strong bond.
Now, with the whole wheelchair thing, I can tell you that I have been in a wheelchair, but I’m not anymore. So, if you’re going through a really hard patch, don’t give up. I’ve gone through physical therapy, occupational therapy, I went through every kind of therapy there is to get my mobility back. I’m trying-I work every day to make my life the best I can with my MS. And another important thing is to make sure that you have a neurologist that you can trust. Be very open with them because they are there to help you fight your MS and prolong that progression of the disease. So, if you are not open, you can’t really receive the best care that you could if you were completely honest. So, everything is going to be okay. I know it doesn’t seem like that right now. It just takes a lot of getting used to and you’ve just got to keep your head up and keep going with it. Don’t ever give up and don’t ever stop fighting.
Hello you MSers. My name is Carol Corcini-Ervin. I live in Cape Carl, Florida. I’m 60 years old. Videographer: She doesn’t look it, I know. And I have MS. I was diagnosed 26 years ago and to be honest with you, I really don’t remember, because it was so long ago, I don’t remember how I felt when I first got the diagnosis.
Ah, can we talk here? Joan Rivers? Oh let me do the talking, I remember everything. Do you know what they had to slow the progression of multiple sclerosis back in 1988? Nothing. Nothing. You know what they have now? A pill, a little pill, the size of a valium.
I’ll take it from here. What Joan is saying is, that if you’re diagnosed today, you’re very lucky actually. Because they have so many therapies out there now that you can try to slow the progression and the sooner you get on them, the better. As soon as you are diagnosed, you should get on one of these therapies because they will help increase the time between having relapses.
And always have a positive attitude. It goes a long way. And surround yourself with family and friends and a really good support group. That really helps. And, you know, there is one other thing. There is a side effect of having MS that they’ll never tell you, but I’m going to tell you now. You could become an author. Yes, I wrote this book, The Lighter Side of MS: Life, Laughter, and Sucking It Up. And guess what, I don’t write books, but I did. I wrote it a couple of years ago because I had MS and I wrote about what I knew. So, everybody is different and you never know what you’re going to be because MS is what we have, it’s not who we are. So, just be yourself.
Ah, remember when they gave you steroids? That’s all they could do. They gave you enough steroids to make Arnold Schwarzenegger blush.
Oh, and always remember to keep your sense of humor. I’m Carol Corcini-Ervin and I’ve got this.
Hi, I’m Danica Garcia and I was diagnosed with MS in 2011, October 2011. I was 15 years old, I’m now 17 and it completely threw me. I didn’t know what it was but I knew that I wasn’t going to let it stop me. Being diagnosed at such a young age was really hard to take it. People were kind of like, when you tell them, like, ‘Well, I have MS,’ they are kind of like, ‘But you’re a kid.’ And it has affected me and my life a lot.
I’m here to tell you that you can get through this and you are not alone. Reach out to the message boards, the blogs, the forums, everything. There are people out there willing to listen to you. You are not alone in this and don’t beat yourself up over it because it’s not your fault, it’s not. Stay strong, it isn’t the end of the world. You can do it. I know you can. MS is not going to beat, you keep reminding yourself that.
Don’t let your disease take power over you or let it define who you are. But you can do, you will make it. You will live the life that you want to live. You will accomplish all of your dreams, all of your goals. This is just another speed bump in life. You can do this. You’ve got this. MS is just, it’s not who you are, but it’s just a part of who you are, just a little part. Yes, there are complications, but that doesn’t mean you can’t do what you want to do with your life.
I know I’m being very vague, very broad with this, but there’s nothing that you can’t do just because you have been diagnosed. It doesn’t mean anything. You are strong, you are brave, and you will do what you set out to do. I believe in you.
Newly diagnosed with MS? You’ve got this!