MS Diagnosis Journey

For the final episode of the MS Diagnosis Journey podcast, regular host Laura Kolaczkowski and editor Steve Woodward reflect on the stories that they've heard throughout the series. In this chat, Laura and Steve look back on what they found most interesting in previous interviews. Mostly what they take away from the series is the generosity with which guests have shared their own personal stories. Thank you to them and to everyone who has listened to and shared the MS Diagnosis Journey podcast. If you or anyone you know can help with future sponsorship of this podcast, please email msdiagnosisjourney@gmail.com. Edited by Steve Woodward at The Podcasting Editor Podcast artwork by Jackie Zimmerman at Queen of GSD Background Music is “Old Photos” by Olexy Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.

In a change to our regular broadcasting, this time around it's regular host Laura Kolaczkowski's turn to share her journey to a Multiple Sclerosis diagnosis. Despite having a family member with MS, Laura never thought that it was in her future, pushing past a number of symptoms that seem obvious in retrospect. In this interview, Laura relates her initial symptoms and talks about how it was her mother who persuaded her to follow them up. She also talks about the dramatic event which started her road to a diagnosis and how she was lucky enough to link up with a world-renowned neurologist (and former guest on the MS Diagnosis Journey podcast) at the beginning of their career. Laura is active in the national and local MS community, having facilitated patient programs including MS research and an MS Aquatics program. She is also a presence on the internet at MS patient sites. She is the Lead Patient Representative on the Governing Board for iConquerMS, The Accelerated Cure Project’s Patient Powered Research Network; she has served as a Patient Reviewer for the Patient Centered Outcome Research Institute (PCORI); the Department of Defence MS Congressionally Directed Research Program, and is certified as a PCORI Science-trained Ambassador. Read Laura's articles on MultipleSclerosis.net Interview by Steve Woodward Edited by Steve Woodward at The Podcasting Editor Podcast artwork by Jackie Zimmerman at Queen of GSD Background Music is “Old Photos” by Olexy Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.

Damian Washington is a self-proclaimed high-energy dude. So it's easy to see why, when his enthusiasm started to dip on set, he and his wife knew something was wrong. It was so out of character that Damian refers to it as losing his essence of self. As a black man, Damian speaks about the lack of representation he noticed at the time of diagnosis, something that he continues to combat in his advocacy work. In this interview, Damian talks about his first symptoms, the number of 'ologists' that he collected, and their reluctance to give him a definitive diagnosis. He also shares some of the things he has learned from Eastern Religions and Philosophy which have helped him. Visit NoStressMS, Damian's YouTube channel Visit Damian's website Connect with Damian on Twitter, Instagram, and Facebook Interview by Laura Kolaczkowski Edited by Steve Woodward at The Podcasting Editor Podcast artwork by Jackie Zimmerman at Queen of GSD Background Music is “Old Photos” by Olexy Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.

As a physician and a patient living with Multiple Sclerosis, Dr. Susan Payrovi has a unique perspective on managing the condition. But even she dismissed her own initial symptoms, putting them down to exhaustion and tendonitis. In this conversation, Dr. Payrovi recounts seeing four separate neurologists before a friend (who was a plastic surgeon) put a name to her symptoms. She also gives some great tips for keeping records of any unusual sensations. Through the use of self-care and lifestyle habits, Dr. Payrovi says that MS has given her the gift of focusing on what is important to her. Dr. Payrovi practices Integrative and Functional Medicine at Stanford’s Center for Integrative Medicine, and is the founder of TRUE Medicine, an online wellness program for multiple sclerosis. Visit True Medicine MS Interview by Laura Kolaczkowski Edited by Steve Woodward at The Podcasting Editor Podcast artwork by Jackie Zimmerman at Queen of GSD Background Music is “Old Photos” by Olexy Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.

When Cassie Martin noticed sensations of tingling and numbness, she initially put it down to being in Wisconsin in the fall. But a feeling like a buzzer, running from her head to her feet, eventually led Cassie to Doctor Google who told her all about Lhermitte’s Sign, a possible symptom of Multiple Sclerosis. In this interview, Cassie says that her diagnosis came about fairly quickly. But this was only because she took her initial symptoms to her primary care physician (PCP) as soon as possible. It can be hard to express what you're going through but getting to an expert early can provide you with answers. Read Lhermitte’s Sign in MS: What It Is & How To Treat It (WebMD) Interview by Laura Kolaczkowski Edited by Steve Woodward at The Podcasting Editor Podcast artwork by Jackie Zimmerman at Queen of GSD Background Music is “Old Photos” by Olexy Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.

Linda Kanner was diagnosed with MS in 2007. She had an awareness of the disease through an Uncle, but her official diagnosis still took twenty years after first presenting symptoms to a medical professional. Shortly after this, Linda became a member of the board of The Accelerated Cure Project for MS. She also now serves on the iConquerMS Governing Board. In this interview, Linda recounts her first symptoms and how, despite MS being the "definitive sickness" in her family, it still took her a while to recognize these symptoms for what they were. She also reminds patients that no one is more expert in their bodies than they are - so if you're going through your own diagnosis journey keep going until you get an answer. Visit iConquerMS Visit the Accelerated Cure Project Interview by Laura Kolaczkowski Edited by Steve Woodward at The Podcasting Editor Podcast artwork by Jackie Zimmerman at Queen of GSD Background Music is “Old Photos” by Olexy Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.

When she noticed the appearance of strange symptoms, Kathy Reagan Young put them down to being an exhausted stay-at-home mom. It was only down to the input of friends and business associates that she was able to be fast-tracked to a diagnosis of Multiple Sclerosis. Kathy recognizes the privilege and luck that played a part in her high-speed diagnosis. But since then she has dedicated herself to providing education, inspiration, and motivation to everyone dealing with Multiple Sclerosis. She does this by blogging about her own experiences, interviewing experts and other patients on her podcast, and trying to find the funny in all of it. And that even includes her dealings with US Healthcare. The name of her website? FUMS. In this interview, Kathy urges anyone who is going through their own MS Diagnosis Journey - particularly if they're used to putting everyone else's health before their own - to always follow up on any unusual symptoms. As she says, "If you notice it, there's a reason you notice it." Visit Kathy's blog and podcast, FUMS Visit Kathy's podcast and membership community, Patients Getting Paid, which focuses on flexible, remote work possibilities that accommodate the health of people with chronic illnesses Interview by Laura Kolaczkowski Edited by Steve Woodward at The Podcasting Editor Podcast artwork by Jackie Zimmerman at Queen of GSD Background Music is “Old Photos” by Olexy Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.

Renita Larsen was an athlete and a dancer when her mysterious symptoms began. She shares her journey over several years and even surgery before connecting with a neurologist who put her history together. Renita credits the support of her family for getting her through years of doctors who told her she was too young and active to have any issues. In this interview, Renita relates how, on receiving a diagnosis, "You know what it is but you don't know what it is." She also tells how she received her diagnosis while grocery shopping with her husband, her previous awareness of MS, and how she continues to work towards bettering herself in order to slow her progression down. Visit Renita's blog Interview by Laura Kolaczkowski Edited by Steve Woodward at The Podcasting Editor Podcast artwork by Jackie Zimmerman at Queen of GSD Background Music is “Old Photos” by Olexy Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.

Hope could have been Teresa Wright-Johnson’s middle name because she exudes hope in all she does. Treatment for a workplace injury was the trigger for her MS diagnosis, which added an additional dimension to her already impressive health advocacy work. She shares the story of learning she had multiple sclerosis on top of living with congenital heart disease, and how neither of those conditions changed her outlook on life. Teresa also touches on her diagnosis with MS despite having no symptoms, her belief that your body will always tell you when something is going on, and the plus side of having a three-year wait for her final diagnosis. Listening to this conversation, you'll see why Teresa is a much sought-after public speaker for both heart disease and multiple sclerosis. Visit Teresa Wright-Johnson Interview by Laura Kolaczkowski Edited by Steve Woodward at The Podcasting Editor Podcast artwork by Jackie Zimmerman at Queen of GSD Background Music is “Old Photos” by Olexy Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.

Dawn Morgan was young and living her best single-woman life when abnormal symptoms began to disrupt her life. The first doctor she saw put what she was experiencing down to B12 deficiency and her vegetarian diet. However, what she now knows is MS fatigue wouldn't let her be. As a young woman, Dawn admits that she found it hard to make herself heard. Like many people with Multiple Sclerosis, it took several years to get a correct diagnosis, and even longer to find her "forever neurologist." In this interview, Dawn talks about her initial reaction to being diagnosed, the neurologist who told her to "wait and see" before starting treatment, and the value of seeking a second opinion. Listen to Dawn's podcast, The Unquiet Mind Visit The Unquiet Mind Podcast on YouTube Connect with Dawn and The Unquiet Mind Podcast on Instagram Interview by Laura Kolaczkowski Edited by Steve Woodward at The Podcasting Editor Podcast artwork by Jackie Zimmerman at Queen of GSD Background Music is “Old Photos” by Olexy Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.

Robbie Gillett was at work when he became unable to move when he was installing a kitchen unit. He was convinced that he was dying or having a stroke but the doctors who saw him initially thought he had Clinically Isolated Syndrome (CIS). However, it soon became clear that his MS diagnosis journey had begun. As a way to process his new reality, Robbie began writing poetry, which has now been published in his first collection, Thoughts of a Warrior: Beneath the Tracksuit. In this interview, Robbie relates how he was actually diagnosed with MS twice and wrote his poetry collection on his phone while lying in bed. He also very kindly reads the first poem he ever wrote, "This Time". Connect with Robbie on Instagram, Twitter, and Facebook Buy Robbie's book, Thoughts of a Warrior: Beneath the Tracksuit Interview by Laura Kolaczkowski Edited by Steve Woodward at The Podcasting Editor Podcast artwork by Jackie Zimmerman at Queen of GSD Background Music is “Old Photos” by Olexy Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.

Roger Cook is from Newcastle upon Tyne, England, and is active in the Newcastle chapter of the MS Society and the MS Research and Relief Fund (UK). He was officially diagnosed with Multiple Sclerosis in 2001 but had symptoms much earlier in his life. As you'll hear in this interview, these initial symptoms were dismissed because doctors assumed that, as a student in the final year of his degree, Roger simply wanted some time off! Despite the challenges Roger has faced, he still was able to follow a successful career as an aeronautical engineer and worked around the UK following his diagnosis. Now medically retired, he is heavily involved with the MS community and is an avid football (soccer) fanatic. Visit Roger's blog, Individually ahead!, and connect with him on Twitter Interview by Laura Kolaczkowski Edited by Steve Woodward at The Podcasting Editor Podcast artwork by Jackie Zimmerman at Queen of GSD Background Music is “Old Photos” by Olexy Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.

Veronica Daniels-Lewis is a Multiple Sclerosis myth-buster! Firstly, she is a woman of color - and as we've learned before, some medical professionals still believe that MS is a white woman's disease. Secondly, her three pregnancies were all marked by symptoms that she now recognizes as being early presentations of MS, busting the myth that all women with MS see a reduction in disease activity when they're pregnant. All of which goes to show that MS is a condition where what one person experiences is not necessarily the case for everyone. In this interview, Veronica talks about her fight to get a diagnosis, her voluntary work for the National MS Society, and the fact that, when she was diagnosed in 1996, nobody thought that nutrition or exercise could play a part in managing MS - another myth that has been well and truly busted! Read Still In Charge by Veronica Daniels-Lewis (Momentum Magazine) Visit National MS Society Interview by Laura Kolaczkowski Edited by Steve Woodward at The Podcasting Editor Podcast artwork by Jackie Zimmerman at Queen of GSD Background Music is “Old Photos” by Olexy Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.

Like many of our guests, Joan Jordan's MS diagnosis took many years from her first reported symptoms. However, Joan's situation was complicated by the fact that she was working as a software engineer in various locations around the world - and was having to explain what was happening to her in a language other than her own. In this interview, Joan talks about her MS's slow build-up, how her diagnosis eventually came through piecing together her entire medical history, and how she uses technology to record everyday symptoms between neurology appointments. She also talks about the support that is out there in the wider MS community, and how she creates artwork based on her MRI pictures. Joan is a graduate of the EUPATI program, which trains patient advocate consultants. Connect with Joan on LinkedIn See examples of Joan's art at Optic Neuritis, Stained Glass and MS Interview by Laura Kolaczkowski Edited by Steve Woodward at The Podcasting Editor Podcast artwork by Jackie Zimmerman at Queen of GSD Background Music is “Old Photos” by Olexy Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.

Though he was aware of MS while growing up, it took a number of neurologists before Kyle Warendorf was able to connect the dots of his medical history. He was finally diagnosed with MS in 2011, but by trawling through his medical archeology he was able to recognize early indications going back 30 years. In this interview, Kyle talks about his symptoms and the relief he felt when he was finally diagnosed. And even though he says the relationship you have with your neurologist is like a marriage, he has a message for people who are at the start of their own diagnosis journey: "Don't be afraid to be the squeaky wheel." Interview by Laura Kolaczkowski Edited by Steve Woodward at The Podcasting Editor Podcast artwork by Jackie Zimmerman at Queen of GSD Background Music is “Old Photos” by Olexy Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.

In a first for this podcast, Susan Silver was diagnosed with MS not once but twice. Initially, Susan was told that the symptoms she was reporting - including fatigue, vertigo, and problems with her vision - were caused by her high-pressure job and irregular hours. Eventually, she was told she had MS, given a collection of leaflets, and told to go home and choose one of the CRAB medications (Copaxone, Rebif, Avonex, and Betaseron). A second neurologist then said that she didn't have MS and it was all in her head. She eventually met her "forever neurologist" and received a final diagnosis. In this interview, Susan shares her incredible story and urges people to educate themselves through reliable sources. And, of course, she underlines the importance of building a medical team that you trust and who supports you. Visit the Rocky Mountain MS Center Interview by Laura Kolaczkowski Edited by Steve Woodward at The Podcasting Editor Podcast artwork by Jackie Zimmerman at Queen of GSD Background Music is “Old Photos” by Olexy Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.

Toccara was diagnosed with Multiple Sclerosis in 2008 as she was wrapping up her final semester of graduate school. At that time, she didn't see anyone that looked like her in the materials that were available to help make sense of her diagnosis. Toccara joined the iConquerMS RIDE Council (Research, Incluson, Diversity, Equity because she wants to help reach those who are affected by MS but don't see themselves being represented in the wider MS community, media, or the majority of clinical studies. Although her diagnosis came out of left field, Toccara is always ready to motivate and help people see the good in the bad! As you'll hear, she passionately believes in the value of community to help you along your own diagnosis journey. Visit The RIDE Council at iConquerMS.org Interview by Laura Kolaczkowski Edited by Steve Woodward at The Podcasting Editor Podcast artwork by Jackie Zimmerman at Queen of GSD Background Music is “Old Photos” by Olexy Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.

It took DeLisa French ten years from the onset of her symptoms before she got a diagnosis of Multiple Sclerosis. She now sees MS as a blessing and a curse, and although it might slow her down, she won't let it stop her. DeLisa is another guest to advise people to advocate for themselves on their own diagnosis journeys. As she says, whether you're covered by Medicaid, Medicare, or Health Insurance, your doctors are paid by YOU. So make sure they know what you're dealing with! DeLisa's MS has now been classified as Secondary Progressive, but she continues to look forward to the future with positivity. Interview by Laura Kolaczkowski Edited by Steve Woodward at The Podcasting Editor Podcast artwork by Jackie Zimmerman at Queen of GSD Background Music is “Old Photos” by Olexy Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.

Even though Helen has a background in Medical Research, her diagnosis with Multiple Sclerosis in the late 1990s still came out of the blue. Not least because - as you'll hear - her symptoms matched exactly with B12 deficiency and pernicious anemia. Helen talks about the words of wisdom that her brother shared, the lack of information that was out there in the very early days of the internet, and the power that comes when the symptoms that you've had for years are finally given a name. Interview by Laura Kolaczkowski Edited by Steve Woodward at The Podcasting Editor Podcast artwork by Jackie Zimmerman at Queen of GSD Background Music is “Old Photos” by Olexy Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.

If you've ever felt bad about the fact that you were unaware of Multiple Sclerosis before beginning your own journey to a diagnosis, take comfort. Patty Solis was completely unaware of MS, despite having worked in a variety of healthcare roles for a number of years. In this interview, she talks about the fact that it was her invisible symptoms that really started her on the journey to her diagnosis. She also recommends that you take along a close family member or friend to your appointments. Patty spent a lot of time making excuses for her symptoms but having somebody with her forced her to remember things that she'd forgotten. Even though MS forced her out of nursing, which was a big part of her personality, Patty can see the positives from her diagnosis. She feels gratitude, is more empathetic, and has a greater understanding of mental illness. Content warning: this episode features a brief mention of suicide ideation (from 13:25 to 13:55). Interview by Laura Kolaczkowski Edited by Steve Woodward at The Podcasting Editor Podcast artwork by Jackie Zimmerman at Queen of GSD Background Music is “Old Photos” by Olexy Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.