Lindsay Karp

@lindsaykarp | contributor
Lindsay Karp is a writer residing in the suburbs of Philadelphia with her husband and two sons. She writes about her long diagnostic journey and life with multiple sclerosis (MS) as well as parenting and other aspects of her life. She has recently entered the world of patient advocacy to help others living with MS and those who remain undiagnosed, as she did for many years. Lindsay is an aspiring published children’s book author and is working on a memoir of her 13 year diagnostic journey. Follow Lindsay's publications on Twitter: @karplindsay
Lindsay Karp

Living Cautiously With MS as Pandemic Mandates Are Lifted

Throughout the world, people are emerging from the COVID-19 pandemic, returning to a sense of normalcy. With the availability of vaccines, those with fully functioning immune systems can feel comfortable gathering indoors without masks and resuming life as it once was. But this is not the case for everyone. Many of us with multiple sclerosis (MS) are on medications that suppress our immune systems, reducing our ability to mount a full vaccine response and leaving us more vulnerable to infectious disease. Not only are vaccines less effective for those on immunosuppressants, but our immune systems also struggle to fight off viruses, allowing a more severe illness to set in. As the world says goodbye to mask mandates, MS patients who are immunosuppressed feel abandoned and forgotten. We are often met with judgment as others try to understand how and why the virus still poses a risk to us. Some are quick to assume our worries are excessive, but our fear is valid, and our precautions are warranted. For those of us with MS, a more severe case of COVID-19 is certainly a large part of our concern, but it is not the only factor. We know what living with a chronic illness means, and we fear living with long COVID on top of our already exhaustive list of MS symptoms. Take it from us: Chronic illness can impact every day of your life. As I enter public places, I continue to wear a mask to reduce my risk of contracting COVID-19. I continue to socialize outdoors and receive boosters as they are approved because any vaccine response is better than none. Those of us with MS who qualify for a preventative monoclonal antibody search for ways to receive this vital treatment that isn’t readily available. We can feel more protected with the administration of these antibodies, but the production has been limited and finding doses is reduced to pure luck. When I wear a mask, it only protects me to a certain extent. Some patients with MS have children who attend schools where masks are no longer required. With very few students or teachers wearing masks, our children are now in a position of having to choose between wearing a mask to keep their mother or father safe or fitting in with the crowd, a decision they shouldn’t have to make. We, as parents with MS, may face an increased risk of COVID-19 because of it. As the majority of the world returns to normal life, those of us with suppressed immune systems hope to be remembered. The help of our community is vital to our wellbeing at a time when a viral threat still exists.  As the availability of more COVID-19 treatments become available, I hope that there will be a time when we can live fully again, despite the status of our immune systems. We are worn down from the pandemic just as much as the rest of the world, but letting our guard down isn’t an option just yet. We need our friends, family, and extended community to help protect us so that we can all cross the finish line together. If we help others in their time of need, they’ll be ready to help us if and when that time comes. The world would truly be a beautiful place if we cared and showed concern for all, especially those who walk a path different from our own.

Lindsay Karp

Why Progress In Multiple Sclerosis Treatments Gives Me Hope

There was a time, not long ago, when multiple sclerosis (MS) was an untreatable disease. As research progressed and we learned more about the attack against myelin in the nervous system, treatments were designed specifically to change the course of disease, notably for those with relapsing-remitting MS. Since the early 1990s, when the first MS treatments became available, medications have become more effective at preventing further neurological damage and treatment options have become more plentiful. There are now more than twenty MS treatments to choose from, including some specifically approved for those with a primary progressive course. Slowing disease progression is now a reality in many cases. The available MS medications include pills, IV infusions, and self-administered shots. Tolerance of each medication varies from person to person so what may be the right treatment for one may not be the best for another. The ability to choose the MS medication that works best for each individual has been a game changer. In fact, current research is looking at a way to predict which drugs will work best for individual patients which could eliminate the need for trial and error in treatment. MS treatments have had a huge impact on my life with MS, and I hope that they can help others more in the future as well. Like many others, I waited a long time for my diagnosis. I’ve learned that MS is a unique experience for each patient, often making it difficult to pinpoint the source of the problem. After 13 years of living with MS without treatment, I felt how overwhelmingly weak I became when my disease was uncontrolled. My energy levels were completely drained, leaving me unable to walk or support my body while standing. After a trial of different MS medications and now having been on a consistent treatment for a few years, my symptoms have calmed, and I am able to participate in more activities. Of course, I still have a variety of waxing and waning symptoms as these medications cannot repair damage, but the decrease in the severity and frequency of flares has given me some of my life back. For that I am so thankful! Knowing how greatly MS treatments have improved gives me hope on days when I’m struggling with this disease. When my body wants to collapse from exhaustion, I picture myself, and every other person with MS, participating in the activities we’ve missed out on for years. I imagine myself in the future running through a field of flowers and hiking to the top of a mountain. I see a world where MS is more deeply understood, and treatments are capable of halting disease before symptoms progress. I hope for a time when MS can be cured for those already living with the disease and prevented in those who may be at risk for developing MS in the future. I am hopeful for the future because I see how far we have already come. To say that I am thankful for the MS treatments we have today is an understatement. These advancements allow me to live my life and enable me to look forward to additional discoveries in the not-so-distant future. My journey with MS has taught me many things, but most importantly, it has taught me to be hopeful that progress in developing potentially life-changing MS treatments will continue in the future.

Lindsay Karp

How I Make Family Memories Despite Living With Multiple Sclerosis

As a child, I remember family vacations, trips to the zoo, and adventures in the woods. I recall the thrill of experiencing new places and the comfort of being with my parents as I learned about the world and all its beauty. Most of all, I remember a contentment in knowing we were living these moments together as a family. When I think of those times now, as a mother to my own children, I worry these memories I have will differ from the memories my children will form. I am a mother with multiple sclerosis (MS), and I can’t participate in every family activity. The truth is, my children will remember events without me, and while I’m relieved they can have these experiences with my husband, part of me is mourning the memories I’ll never be a part of. In the summer of 1993 when I was ten years old, my family went on vacation to New England. I still reminisce about climbing the rocky beaches in Maine and crawling through caves in the mountains of New Hampshire. We were a family of four, and with every vacation, celebration, or family get together, a picture of the four of us was ingrained in my mind. I’m not sure how I’d remember these events had my mother not been present, but I do know that I recall the warmth of her being there with us. There is an unspoken comfort a mother can provide for her children merely through her presence. I hope that my boys feel this , even at times when I can’t be with them. My husband is a hiker at heart. Since their father is an Appalachian Trail thru-hiker (yes, he hiked the entire trail over a five-month period!), I knew my boys would experience the great outdoors to a level beyond my capability. My husband and sons have been hiking together since my boys were old enough to walk. Hiking has become part of who they are and will always remain part of who they become. I’m grateful they can experience the accomplishment of climbing a mountain until they reach the peak, but I know this is an activity they’ll never do with me. No matter how many years into this disease I am, there will always be a sense of sadness when I miss watching them trek through winding trails and gaze, in awe, at the top of the mountain they just climbed. Seeing pictures afterwards is wonderful, but it will never replace being there by their side. There are other times when I find my boys leaving home to embark on an adventure without me. Some days, I miss something as simple as going to the playground. The hardest part is knowing I wasn’t given a choice of whether I’d like to join. That choice was taken from me when MS erupted in my nervous system. Initially, it was hard for me to accept that the memories I had from my childhood would differ from the memories my children would form, but I realized there was a solution. We found activities that fit my ability level. They continued hiking, of course, but I wanted to be able to share their love of the outdoors with them. I trained on my exercise bike and slowly increased my stamina and resistance level. Years of persistence, as well as being on the right MS treatment, paid off. We began biking, as a family of four, on flat bike paths. When I’m on my bike, I feel as though my body is disease free. The weakness I feel when walking vanishes as I pedal forward. With the wind in my face and my children beside me, we now form family memories they’ll never forget. And, thankfully, I am a part of these memories. There will always be days I spend on the sidelines. My children will remember that I couldn’t be present for important milestones or adventures from time to time. But my hope is that the times I am present will stand happily and strongly in the forefront of their minds. Living with MS sometimes means missing wonderful days in my children’s lives, but it also means the times when I am present are that much more meaningful. And that makes it all worth it.

Lindsay Karp

Multiple Sclerosis Treatment Helped Me Spend Halloween With My Kids

I never knew I’d be lucky enough to see my children trick or treat. I thought walking the neighborhood in combination with standing was out of the realm of possibility for me. I’d accepted that I would revel in taking pictures beforehand and hear about their evening at the end of the night. But this year, that all changed. After living 13 years as an undiagnosed patient, untreated for multiple sclerosis, I’ve now been on medication for three years. My neurologist warned me that it might take a few years for treatment to calm my symptoms. He made no promise that I would improve, but was hopeful the wide range of fluctuations I was having would settle. Some days I could barely stand. Other days I ran errands. Some days I wanted to give up. Other days provided renewed hope. Over the last six months, my physical functioning has become more constant from day to day. Flares still present themselves, but to a lesser degree and less often. I can depend on my body more than I ever could before. I still cannot guarantee I’ll be able to attend a function at my children’s school or roam a museum at a future time, but it’s much more likely my body will allow it now than it was before. We’d planned for my husband to take the kids trick or treating in a friend’s neighborhood. But when a group dinner was arranged, I decided to join beforehand, and determine, in the moment, if I’d join for the trick or treating portion of the evening. When that moment arrived, my boys and their friends dashed towards the driveway, excitement propelling them into the evening. Without a second to contemplate my ability to make it, I followed behind, hoping I’d prove my worries untrue. With Spock, Captain Kirk, and their friends leading the way, I followed their trail for an hour; no sitting or resting involved. We walked, we laughed, and the children had a Halloween evening they’ll remember for years to come. And I was part of it. I didn’t need to hear all about it at the end of the night, because I lived it, firsthand, for the first time ever. If someone had told me two years ago, or even last year, that I’d go trick or treating with my kids, I wouldn’t have believed them. I don’t know what future Halloweens will look like or if I’ll be able to do this yearly, or ever again, but I’ve proven to myself that what is impossible one day, may be possible again in the future. I am hopeful. From desperate nights spent crying on the bathroom floor as an undiagnosed patient, I now see the sun shining brightly on my future. I’ll never say never again, because I can see now that the best is, certainly, yet to come.

Sponsored By
Lindsay Karp

My 13-Year Journey to Get an MS Diagnosis

It was the summer of 2005, and I was about to start graduate school for speech-language pathology. I was awarded a government grant to aid in research while earning my degree, which in turn removed the weight of building up debt during my studies. Finally! I was old enough to buy a drink at the bar, graduate school applications were in my past, and I was fortunate to be staying at my undergraduate alma mater to continue my studies. Life was good, and I was excited for what was to come. I never thought I’d wake up one morning struggling to move. But that is exactly what happened. Right in the middle of my dreams coming true, I woke up to pain and stiffness that exhausted the strength of my legs. That was just the beginning, but my naïve self just assumed I would go to the hospital, have some lab work done, and find a simple fix for my strange ailment. In truth, that’s not at all what my journey looked like. My strange symptoms didn’t stop, but I knew that if I took time off from school, my chances of returning were slim to none. I studied hard for two years while driving the three hours home to see doctors every three months. I saw rheumatologists, neurologists, immunologists, allergists and endocrinologists. No one could tell me what was causing my symptoms. One doctor told me to go home and have an alcoholic drink. I was told to exercise my deconditioned body, and then I’d be fine. I had no doubt that something was seriously wrong, but no one was solving my puzzle or listening to what I was saying about my symptoms. By the time I graduated, I’d learned to live with my new body. Walking and standing were difficult. I had to walk a short distance, sit and rest, and then do a little more. My legs ached and felt as though they were running out of energy, like a car with a near empty gas tank. I was poked, prodded and poked some more. Getting lab work done constantly was my new normal as I began working my first job as a speech-language pathologist. Somewhere deep in my overwhelmed brain, a voice told me to keep living my life. A particle of hope assured me that my continued medical search would eventually result in a diagnosis. I met my now-husband as I acclimated to my new career. He happened to be in an internal medicine residency, which was quite funny; I absolutely despised doctors at this point. Appointment after appointment, doctors listened to my story but didn’t give my case the time it needed to figure out the root cause of my symptoms. I bounced around from facility to facility like a ping-pong ball on a cement floor. I spent a lot of time on Google and joined online support groups for diseases that seemed to fit my case. I traveled more than 1,100 miles to a world-renowned diagnostic center. I was under the impression that they wouldn’t send me home until they diagnosed me. But once again I came home without an answer. I now had not only exhausted many local facilities, but also a diagnostic facility. In addition to lab work, I had gone through MRIs, X-rays, EMGs, GI studies and even exome and genome sequencing. I was rejected from an undiagnosed diseases program, only to be accepted to another program years later. I began feeling uncomfortable in doctors’ appointments, as they questioned why I’d seen so many physicians. Why would I stop searching for an answer when these symptoms affect my life in such a profound way? Despite the setbacks, I always managed to hold onto hope. Of course, I had moments where I felt hopeless and wanted to disappear into a cloud of agony. I spent countless nights crying on the bathroom floor with my head in my lap. It was torture that most people will never experience, and words cannot fully describe. It was often recommended that I take some time off from searching, but I didn’t want to lose any time ignoring what my body was telling me. It wasn’t in my head; this I knew with 100% confidence. It was this fact that allowed me to continue picking myself up, wiping away the tears and finding another new doctor. During my ongoing quest for an answer, my husband and I had two beautiful boys. I like to think that the pain I endured and the struggle of my journey allowed me to give birth twice without an epidural. All the while, I never stopped searching for a doctor that might look at my case as a challenge. Life was hard, but it wasn’t all bad. After I stopped breastfeeding my younger son, I had my second severe flare. I couldn’t walk or stand, so we hired a part-time nanny to help care for my children. By that point, something had to give. About a year later, I was referred to a neurologist that specialized in multiple sclerosis. The first thing he said to me as I entered his exam room was, “You realize your brain MRI is not normal, right?” Sure, I knew I had a few tiny lesions on my brain, but I’d been told by countless neurologists that they were nothing to be concerned about. They were nonspecific and not typical of MS. He ordered a lumbar puncture, which in hindsight should have been ordered in 2005. The results showed five oligoclonal bands and an elevated white blood cell count. I had been living with MS for 13 years without treatment. All of those doctor appointments, lab draws, travel to medical facilities and the nights crying on the bathroom floor came tumbling down into two letters: MS. I was scared, but the weight that had been sitting on my shoulders could now be lifted. I dreamt of having a treatment for so many years, and now it was finally my time to be treated. My journey for a diagnosis is certainly a long one, and it proves just how important it is to never give up hope. I try to use my experience to teach others that no amount of time should mean it’s time to give up. I like to remind neurologists, and all doctors, that each person living with MS will have their own story. Really listening to each patient could mean the difference between halting disease progression and letting someone live with a progressive disease without treatment. To my fellow undiagnosed community, I know what it feels like to wake up each morning realizing you’re still struggling without an answer. I know the fear of wondering what will happen to your body and the exhaustion of telling your story over and over, until the words make you sick to your stomach. Don’t forget that we are strong for pushing on when giving up feels far easier. Don’t let one, two or even three doctors rule out a diagnosis when you don’t agree. Any disease can present differently in different people. No one knows your body as well as you do, so never stop advocating for your own health. I wish more resources were available to me earlier on, websites like MoretoMS.com, that might have provided me with some answers and direction. Connect with others who have similar symptoms and share your experiences. You never know when someone may help you or you may help someone else. Remember that no number of doctors or length of time is too long to keep searching. Passing time allows science to catch up with your body. It increases the odds that you’ll stumble upon the right doctor. Don’t let anyone tell you to give up. Your answer will come, and it will make every moment of your journey worth it.

Sponsored By
Lindsay Karp

My 13-Year Journey to Get an MS Diagnosis

It was the summer of 2005, and I was about to start graduate school for speech-language pathology. I was awarded a government grant to aid in research while earning my degree, which in turn removed the weight of building up debt during my studies. Finally! I was old enough to buy a drink at the bar, graduate school applications were in my past, and I was fortunate to be staying at my undergraduate alma mater to continue my studies. Life was good, and I was excited for what was to come. I never thought I’d wake up one morning struggling to move. But that is exactly what happened. Right in the middle of my dreams coming true, I woke up to pain and stiffness that exhausted the strength of my legs. That was just the beginning, but my naïve self just assumed I would go to the hospital, have some lab work done, and find a simple fix for my strange ailment. In truth, that’s not at all what my journey looked like. My strange symptoms didn’t stop, but I knew that if I took time off from school, my chances of returning were slim to none. I studied hard for two years while driving the three hours home to see doctors every three months. I saw rheumatologists, neurologists, immunologists, allergists and endocrinologists. No one could tell me what was causing my symptoms. One doctor told me to go home and have an alcoholic drink. I was told to exercise my deconditioned body, and then I’d be fine. I had no doubt that something was seriously wrong, but no one was solving my puzzle or listening to what I was saying about my symptoms. By the time I graduated, I’d learned to live with my new body. Walking and standing were difficult. I had to walk a short distance, sit and rest, and then do a little more. My legs ached and felt as though they were running out of energy, like a car with a near empty gas tank. I was poked, prodded and poked some more. Getting lab work done constantly was my new normal as I began working my first job as a speech-language pathologist. Somewhere deep in my overwhelmed brain, a voice told me to keep living my life. A particle of hope assured me that my continued medical search would eventually result in a diagnosis. I met my now-husband as I acclimated to my new career. He happened to be in an internal medicine residency, which was quite funny; I absolutely despised doctors at this point. Appointment after appointment, doctors listened to my story but didn’t give my case the time it needed to figure out the root cause of my symptoms. I bounced around from facility to facility like a ping-pong ball on a cement floor. I spent a lot of time on Google and joined online support groups for diseases that seemed to fit my case. I traveled more than 1,100 miles to a world-renowned diagnostic center. I was under the impression that they wouldn’t send me home until they diagnosed me. But once again I came home without an answer. I now had not only exhausted many local facilities, but also a diagnostic facility. In addition to lab work, I had gone through MRIs, X-rays, EMGs, GI studies and even exome and genome sequencing. I was rejected from an undiagnosed diseases program, only to be accepted to another program years later. I began feeling uncomfortable in doctors’ appointments, as they questioned why I’d seen so many physicians. Why would I stop searching for an answer when these symptoms affect my life in such a profound way? Despite the setbacks, I always managed to hold onto hope. Of course, I had moments where I felt hopeless and wanted to disappear into a cloud of agony. I spent countless nights crying on the bathroom floor with my head in my lap. It was torture that most people will never experience, and words cannot fully describe. It was often recommended that I take some time off from searching, but I didn’t want to lose any time ignoring what my body was telling me. It wasn’t in my head; this I knew with 100% confidence. It was this fact that allowed me to continue picking myself up, wiping away the tears and finding another new doctor. During my ongoing quest for an answer, my husband and I had two beautiful boys. I like to think that the pain I endured and the struggle of my journey allowed me to give birth twice without an epidural. All the while, I never stopped searching for a doctor that might look at my case as a challenge. Life was hard, but it wasn’t all bad. After I stopped breastfeeding my younger son, I had my second severe flare. I couldn’t walk or stand, so we hired a part-time nanny to help care for my children. By that point, something had to give. About a year later, I was referred to a neurologist that specialized in multiple sclerosis. The first thing he said to me as I entered his exam room was, “You realize your brain MRI is not normal, right?” Sure, I knew I had a few tiny lesions on my brain, but I’d been told by countless neurologists that they were nothing to be concerned about. They were nonspecific and not typical of MS. He ordered a lumbar puncture, which in hindsight should have been ordered in 2005. The results showed five oligoclonal bands and an elevated white blood cell count. I had been living with MS for 13 years without treatment. All of those doctor appointments, lab draws, travel to medical facilities and the nights crying on the bathroom floor came tumbling down into two letters: MS. I was scared, but the weight that had been sitting on my shoulders could now be lifted. I dreamt of having a treatment for so many years, and now it was finally my time to be treated. My journey for a diagnosis is certainly a long one, and it proves just how important it is to never give up hope. I try to use my experience to teach others that no amount of time should mean it’s time to give up. I like to remind neurologists, and all doctors, that each person living with MS will have their own story. Really listening to each patient could mean the difference between halting disease progression and letting someone live with a progressive disease without treatment. To my fellow undiagnosed community, I know what it feels like to wake up each morning realizing you’re still struggling without an answer. I know the fear of wondering what will happen to your body and the exhaustion of telling your story over and over, until the words make you sick to your stomach. Don’t forget that we are strong for pushing on when giving up feels far easier. Don’t let one, two or even three doctors rule out a diagnosis when you don’t agree. Any disease can present differently in different people. No one knows your body as well as you do, so never stop advocating for your own health. I wish more resources were available to me earlier on, websites like MoretoMS.com, that might have provided me with some answers and direction. Connect with others who have similar symptoms and share your experiences. You never know when someone may help you or you may help someone else. Remember that no number of doctors or length of time is too long to keep searching. Passing time allows science to catch up with your body. It increases the odds that you’ll stumble upon the right doctor. Don’t let anyone tell you to give up. Your answer will come, and it will make every moment of your journey worth it.

Sponsored By
Lindsay Karp

My 13-Year Journey to Get an MS Diagnosis

It was the summer of 2005, and I was about to start graduate school for speech-language pathology. I was awarded a government grant to aid in research while earning my degree, which in turn removed the weight of building up debt during my studies. Finally! I was old enough to buy a drink at the bar, graduate school applications were in my past, and I was fortunate to be staying at my undergraduate alma mater to continue my studies. Life was good, and I was excited for what was to come. I never thought I’d wake up one morning struggling to move. But that is exactly what happened. Right in the middle of my dreams coming true, I woke up to pain and stiffness that exhausted the strength of my legs. That was just the beginning, but my naïve self just assumed I would go to the hospital, have some lab work done, and find a simple fix for my strange ailment. In truth, that’s not at all what my journey looked like. My strange symptoms didn’t stop, but I knew that if I took time off from school, my chances of returning were slim to none. I studied hard for two years while driving the three hours home to see doctors every three months. I saw rheumatologists, neurologists, immunologists, allergists and endocrinologists. No one could tell me what was causing my symptoms. One doctor told me to go home and have an alcoholic drink. I was told to exercise my deconditioned body, and then I’d be fine. I had no doubt that something was seriously wrong, but no one was solving my puzzle or listening to what I was saying about my symptoms. By the time I graduated, I’d learned to live with my new body. Walking and standing were difficult. I had to walk a short distance, sit and rest, and then do a little more. My legs ached and felt as though they were running out of energy, like a car with a near empty gas tank. I was poked, prodded and poked some more. Getting lab work done constantly was my new normal as I began working my first job as a speech-language pathologist. Somewhere deep in my overwhelmed brain, a voice told me to keep living my life. A particle of hope assured me that my continued medical search would eventually result in a diagnosis. I met my now-husband as I acclimated to my new career. He happened to be in an internal medicine residency, which was quite funny; I absolutely despised doctors at this point. Appointment after appointment, doctors listened to my story but didn’t give my case the time it needed to figure out the root cause of my symptoms. I bounced around from facility to facility like a ping-pong ball on a cement floor. I spent a lot of time on Google and joined online support groups for diseases that seemed to fit my case. I traveled more than 1,100 miles to a world-renowned diagnostic center. I was under the impression that they wouldn’t send me home until they diagnosed me. But once again I came home without an answer. I now had not only exhausted many local facilities, but also a diagnostic facility. In addition to lab work, I had gone through MRIs, X-rays, EMGs, GI studies and even exome and genome sequencing. I was rejected from an undiagnosed diseases program, only to be accepted to another program years later. I began feeling uncomfortable in doctors’ appointments, as they questioned why I’d seen so many physicians. Why would I stop searching for an answer when these symptoms affect my life in such a profound way? Despite the setbacks, I always managed to hold onto hope. Of course, I had moments where I felt hopeless and wanted to disappear into a cloud of agony. I spent countless nights crying on the bathroom floor with my head in my lap. It was torture that most people will never experience, and words cannot fully describe. It was often recommended that I take some time off from searching, but I didn’t want to lose any time ignoring what my body was telling me. It wasn’t in my head; this I knew with 100% confidence. It was this fact that allowed me to continue picking myself up, wiping away the tears and finding another new doctor. During my ongoing quest for an answer, my husband and I had two beautiful boys. I like to think that the pain I endured and the struggle of my journey allowed me to give birth twice without an epidural. All the while, I never stopped searching for a doctor that might look at my case as a challenge. Life was hard, but it wasn’t all bad. After I stopped breastfeeding my younger son, I had my second severe flare. I couldn’t walk or stand, so we hired a part-time nanny to help care for my children. By that point, something had to give. About a year later, I was referred to a neurologist that specialized in multiple sclerosis. The first thing he said to me as I entered his exam room was, “You realize your brain MRI is not normal, right?” Sure, I knew I had a few tiny lesions on my brain, but I’d been told by countless neurologists that they were nothing to be concerned about. They were nonspecific and not typical of MS. He ordered a lumbar puncture, which in hindsight should have been ordered in 2005. The results showed five oligoclonal bands and an elevated white blood cell count. I had been living with MS for 13 years without treatment. All of those doctor appointments, lab draws, travel to medical facilities and the nights crying on the bathroom floor came tumbling down into two letters: MS. I was scared, but the weight that had been sitting on my shoulders could now be lifted. I dreamt of having a treatment for so many years, and now it was finally my time to be treated. My journey for a diagnosis is certainly a long one, and it proves just how important it is to never give up hope. I try to use my experience to teach others that no amount of time should mean it’s time to give up. I like to remind neurologists, and all doctors, that each person living with MS will have their own story. Really listening to each patient could mean the difference between halting disease progression and letting someone live with a progressive disease without treatment. To my fellow undiagnosed community, I know what it feels like to wake up each morning realizing you’re still struggling without an answer. I know the fear of wondering what will happen to your body and the exhaustion of telling your story over and over, until the words make you sick to your stomach. Don’t forget that we are strong for pushing on when giving up feels far easier. Don’t let one, two or even three doctors rule out a diagnosis when you don’t agree. Any disease can present differently in different people. No one knows your body as well as you do, so never stop advocating for your own health. I wish more resources were available to me earlier on, websites like MoretoMS.com, that might have provided me with some answers and direction. Connect with others who have similar symptoms and share your experiences. You never know when someone may help you or you may help someone else. Remember that no number of doctors or length of time is too long to keep searching. Passing time allows science to catch up with your body. It increases the odds that you’ll stumble upon the right doctor. Don’t let anyone tell you to give up. Your answer will come, and it will make every moment of your journey worth it.

Lindsay Karp

What It's Like to Navigate Changing Abilities With Multiple Sclerosis

When you live with a disease that’s as impactful as multiple sclerosis (MS), you constantly wonder if each event will be your last of that kind. Will this be my last time walking to the park at the end of the street? Will this be my final time participating in my son’s birthday party? Will today be the last time I stand for a shower without having to sit? Will this be my last time food shopping independently for my family? The list could go on forever. With a determination to be independent, you learn to push yourself past your limits. You learn to accept new levels of normal and find new ways to reach the same goals. And as you push yourself to run errands, to clean the house, to attend your children’s school functions, you struggle to reach the finish line and you wonder if this might be the last time you’re able to make it happen. The struggle is a matter of what your body can and cannot do; not a matter of discomfort or pain. We ignore the pain. We get used to the discomfort. But our ability levels diminish and we cannot find ways to make our bodies complete the task. We try to explain to others that we would be willing to complete the task or attend the event no matter how great the pain or discomfort levels were; if only we could. I would love to come shopping with you, but the amount of walking it requires just isn’t something my body is capable of. As the saying goes, the struggle is real. It is an absolute limitation of our body’s functioning. Diseases like MS are unpredictable and they worsen as you work tirelessly against the grain. You wake up one day and suddenly realize you’re a little worse than you were a year ago; despite the medicine, despite the exercise, despite the healthy diet and despite your positive thinking. You can live your life doing everything the right way and this disease can still strip away your abilities one by one. It’s easy for an onlooker to say don’t dwell on things you cannot control. But these things affect our families ability to stay afloat and they limit our life experience. We need a new way to get groceries. We need further income to pay someone to clean our home. We need a gentle way to explain to our children, yet again, why we cannot be present at their school function. It doesn’t end here. It never ends. When you live with a disease that impacts your daily life, you are constantly facing challenges that can change from day to day. It’s sad, it’s depressing, and it strips away your confidence. But I want you to know that even though no one else in your circle is living with these barriers, there are so many people just like you. We all wake up each morning wondering what we’ll be capable of. We all go to bed each night wondering if we experienced a last today. We can keep going, no matter what that looks like. It means living. It means waking up and facing the day. It means knowing you have mental strength you never would have had if it weren’t for this disease. It means problem solving and asking for help. It’s not easy and it’s certainly not ideal. But, we can choose to wake up and live with the abilities we have knowing that there’s a large group of us, all around the world, all doing this together.

Lindsay Karp

What It's Like to Navigate Changing Abilities With Multiple Sclerosis

When you live with a disease that’s as impactful as multiple sclerosis (MS), you constantly wonder if each event will be your last of that kind. Will this be my last time walking to the park at the end of the street? Will this be my final time participating in my son’s birthday party? Will today be the last time I stand for a shower without having to sit? Will this be my last time food shopping independently for my family? The list could go on forever. With a determination to be independent, you learn to push yourself past your limits. You learn to accept new levels of normal and find new ways to reach the same goals. And as you push yourself to run errands, to clean the house, to attend your children’s school functions, you struggle to reach the finish line and you wonder if this might be the last time you’re able to make it happen. The struggle is a matter of what your body can and cannot do; not a matter of discomfort or pain. We ignore the pain. We get used to the discomfort. But our ability levels diminish and we cannot find ways to make our bodies complete the task. We try to explain to others that we would be willing to complete the task or attend the event no matter how great the pain or discomfort levels were; if only we could. I would love to come shopping with you, but the amount of walking it requires just isn’t something my body is capable of. As the saying goes, the struggle is real. It is an absolute limitation of our body’s functioning. Diseases like MS are unpredictable and they worsen as you work tirelessly against the grain. You wake up one day and suddenly realize you’re a little worse than you were a year ago; despite the medicine, despite the exercise, despite the healthy diet and despite your positive thinking. You can live your life doing everything the right way and this disease can still strip away your abilities one by one. It’s easy for an onlooker to say don’t dwell on things you cannot control. But these things affect our families ability to stay afloat and they limit our life experience. We need a new way to get groceries. We need further income to pay someone to clean our home. We need a gentle way to explain to our children, yet again, why we cannot be present at their school function. It doesn’t end here. It never ends. When you live with a disease that impacts your daily life, you are constantly facing challenges that can change from day to day. It’s sad, it’s depressing, and it strips away your confidence. But I want you to know that even though no one else in your circle is living with these barriers, there are so many people just like you. We all wake up each morning wondering what we’ll be capable of. We all go to bed each night wondering if we experienced a last today. We can keep going, no matter what that looks like. It means living. It means waking up and facing the day. It means knowing you have mental strength you never would have had if it weren’t for this disease. It means problem solving and asking for help. It’s not easy and it’s certainly not ideal. But, we can choose to wake up and live with the abilities we have knowing that there’s a large group of us, all around the world, all doing this together.

Lindsay Karp

When Holidays Become a Marker of Disease Progression

When I was younger, before my disease started, holidays were a celebration of family and tradition that brought happiness and warmth. As I started fighting multiple sclerosis in my early 20s, they then marked a day of hope that maybe by this time next year, I’d be doing a little better. But the years passed on, like the wind on a bitter day; until holidays became a reminder of how I had struggled the year before, and how I was struggling even more now. I try to keep my self-pity at a minimum, which admittedly is not as easy as it sounds. But on marked occasions, like holidays, I am given a brutal comparison of what a year means for my disease and my body’s abilities. Holidays, one year apart, draw an instant timeline of what it means to have a progressive condition. Whether I want to have self-pity or not, these reminders are thrown in my face by the memories from years prior. I do still hold onto some hope for years to come, as our knowledge of medicine and the human body continue to improve with each passing holiday and every year that flies by. But, I’d be lying if I said holidays were full of joy and hope and health and happiness.  I know I am not alone in this notion, and so I want everyone who is in this position to know that it’s OK to feel sorrow during times that are supposed to be wonderful. It’s all right to look back and feel a sense of disease progression and a bit of helplessness over this inevitable process. It allows us to accept the truth and then move on in our journey. I like to think of the holidays as another year around the sun for researchers to find new treatments, for geneticists to delve deeper into the mutations and genetic variations that cause disease, and for our scientific world to catch up with our bodies. I let the tears fall as I think of what I once could do that now seems so impossible. And then I wipe them away, and look towards what may be coming my way down this wild road of chronic illness. To my chronic illness warriors, I hope this holiday season marks a turning point in your journey.  Whether that turn happens now, in five years, or in a decade, good things can come with time.