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MS Diagnosis JourneySeries Wrap-UpFor 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...
2023-03-0218 minMS Diagnosis JourneyLaura Kolaczkowski: "Don't Make It A Solo Act"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...
2023-02-2316 minMS Diagnosis JourneyDamian Washington and Trusting Your GutDamian 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...
2022-12-0816 minMS Diagnosis JourneyDr. Susan Payrovi and the Lessons that MS Can Teach UsAs 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 i...
2022-12-0112 minMS Diagnosis JourneyCassie Martin on Trying to Find The Right WordsWhen 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 ge...
2022-11-2412 minMS Diagnosis JourneyLinda Kanner: "This Is A Sneaky Disease"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 p...
2022-11-1712 minMS Diagnosis JourneyKathy Reagan Young: "Anything You Notice About Your Body, Don't Ignore It"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...
2022-11-1010 minMS Diagnosis JourneyRenita Larsen: "It Continues To Be A Whirlwind"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...
2022-11-0318 minMS Diagnosis JourneyTeresa Wright-Johnson: "My Body Has Never Failed Me"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 th...
2022-10-2720 minMS Diagnosis JourneyDawn Morgan: "You Mean I'm Gonna Look Like Janet Reno?!"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 t...
2022-10-2022 minMS Diagnosis JourneyRobbie Gillett: A Warrior Beneath The TracksuitRobbie 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...
2022-10-1314 minMS Diagnosis JourneyRoger Cook: "Don't Let MS Rule Your Life"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 U...
2022-10-0612 minMS Diagnosis JourneyVeronica Daniels-Lewis and Listening To Your Inner VoiceVeronica 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...
2022-09-2917 minMS Diagnosis JourneyJoan Jordan: "A Slow Volcanic Eruption"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...
2022-09-2214 minMS Diagnosis JourneyKyle Warendorf: Joining the DotsThough 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 o...
2022-09-1518 minMS Diagnosis JourneySusan Silver: "You Feel Like You're Going Nuts!"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 "...
2022-09-0813 minMS Diagnosis JourneyToccara Carter: "Don't Ever Feel Like You're Alone"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...
2022-09-0110 minMS Diagnosis JourneyDeLisa French: "Your Medical Team Works For You!"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, b...
2022-08-2514 minMS Diagnosis JourneyThe Power of Knowing What You HaveEven 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 KolaczkowskiEd...
2022-08-1814 minMS Diagnosis JourneyPatty Solis: Seeing The Positives In The Cards You've Been DealtIf 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...
2022-08-1122 minMS Diagnosis JourneyDan and Jennifer Digmann: Powerhouses in living with MSJennifer and Dan Digmann have been married since 2005 and have lived with Multiple Sclerosis throughout their relationship - Jennifer was diagnosed in 1997, Dan in the year 2000. They met at a National Multiple Sclerosis Society event in 2002, and since then have dedicated their lives to MS activism and helping others to live their best life.In this interview, Dan and Jennifer talk about the sense of shame that surrounded an MS diagnosis in the 90s-2000s, which meant that they were unaware of previous histories of MS in both of their families. They also advise people looking for...
2022-08-0418 minMS Diagnosis JourneyDimika Cavalier: "You Have A Right To Be Analytical When It Comes To Your Health"If you've been diagnosed with MS or any other chronic illness, you will have likely gone through a period when the medical experts you're speaking to don't believe you or even listen to you. However, people of color face that on a whole other level, because some people still believe that MS is a white person's disease.Dimika Cavalier experienced MS symptoms for at least 6 years prior to her diagnosis. She can recall being told by one neurologist that she was "too analytical" when questioning treatment, symptoms and what she was feeling. She is now on the...
2022-07-2811 minMS Diagnosis JourneyShereese Hickson: "It's Something That I Can Live With"A recurring theme of these podcasts is the seemingly random misdiagnoses that come before someone finally says the words "Multiple Sclerosis". Shereese Hickson and her doctors brushed aside her first symptoms for years before she was finally diagnosed in 2012. In this interview, Shereese relates how doctors initially dismissed her because of her weight and the fact that she was taking medication for depression, her experience of having MRI and Lumbar Puncture procedures, and being diagnosed with MS as a single mom.After her prolonged diagnosis process, Shereese feels that, without trying to diminish the seriousness o...
2022-07-2114 minMS Diagnosis JourneyScott James: "If I'm Broke I Need To Find Out Everything About It"Compared to most people, Scott James' diagnosis story is incredibly rapid. Just over a week after being misdiagnosed with a pinched nerve, he was back at the ER with worsening symptoms. The on-call neurologist he saw listened to his story, jabbed him with a safety pin (!), and said that he probably had Multiple Sclerosis. This was later confirmed by an MRI and Lumbar Puncture.Even though it has been an emotional rollercoaster - especially when he has had to take steroids - Scott sees himself as being incredibly lucky. He tells his story here with honesty and...
2022-07-1421 minMS Diagnosis JourneyNohora Gutierrez: "I want to see my lesions!"When she was first diagnosed, Nohora Gutierrez was told by her (former) neurologist to stay away from MS Support Groups. She was even told which drug she was going to take.As a trainer, Nohorra is naturally drawn to learning as much as possible and sharing her knowledge with people. Looking back now, she sees that she was dismissed and wishes that she could have advocated for herself better. In this interview, Nohorra wants anyone who is newly diagnosed to know that they have more treatment options than ever before. And that support groups are o...
2022-07-0719 minMS Diagnosis JourneyJackie Zimmerman: Get To Know Your MSSelf-proclaimed "professional sick person" Jackie Zimmerman was confused when her doctor sent her for a series of neurological tests after she complained of numbness. And even then it was an off-hand comment from somebody unconnected that first put the words Multiple Sclerosis into her head.After receiving her official diagnosis at the age of 21 in a horribly abrupt fashion, she swapped her first neurologist for someone who "frankly didn't suck as much."Even after being diagnosed with Ulcerative Colitis, Jackie continues to show that, even if it feels like it, your life isn't over. She...
2022-06-3015 minMS Diagnosis JourneyDr. Rheanna Robinson: The Inadvertent Gifts of MSAt age 19, Rheanna Robinson had taken a year out of university and planned a solo trip around Europe. But just before she was due to go, she was diagnosed with Multiple Sclerosis.Being raised in British Columbia, Rheanna was very aware of MS and what it was - Canada continues to have one of the highest rates of incidence for MS. However, due to her young age, she still found her diagnosis frightening. She is now a professor at the Department of First Nations Studies at the University of Northern British Columbia. Dr. Robinson's research i...
2022-06-2314 minMS Diagnosis JourneyTeresa Rousseau: Making Room to Dream More DreamsTeresa Rousseau's MS diagnosis came about after years of unsettling but fairly undramatic symptoms - mostly tingling and numbness. Following an inconclusive MRI, she went on an active adventure holiday, finally getting the call from her neurologist two days after her return.She had no knowledge of MS and was unprepared for the onset of disability when it arrived. But along with her posse, she maintains living independently, and her current goal is to walk 10 feet through work with her physical therapist.Teresa's main point is that, following an MS diagnosis, not everything that you'll...
2022-06-1612 minMS Diagnosis JourneyDiane Bly: "You Have Problems With Your Wi-Fi"Diane Bly's diagnosis with MS came relatively quickly - from presenting symptoms in September 2016 to receiving confirmation three months later. However, her first indications could be traced back to the 1990s. In this interview, Diane relates some truly bizarre interactions with medical professionals ("We can't find anything wrong with you but we can certainly do surgery"). Perhaps because of this, she advises people to keep a journal of some kind, in order to track the ups and downs of life with Multiple Sclerosis. As she says, Diane is still learning what her body is doing to...
2022-06-0910 minMS Diagnosis JourneyLucy Kaplan: All of a Sudden, Things Make SenseLooking back now, Lucy Kaplan recognizes that the word-jumbling which occurred on the first day of her final Undergrad semester was a symptom of Multiple Sclerosis. But despite the six months of tests she had following this incident, her MS diagnosis took 22 years. Read that again!Lucy then spent 8 months hiding in her house and didn't tell anyone that she had MS for a year. But as she says in this interview, as alone as you think you feel when you get an MS diagnosis, you feel so much more alone if you're doing this b...
2022-06-0211 minMS Diagnosis JourneyDr. Aaron Boster and the Neurologist's View of MS DiagnosisThe point of this podcast is to capture the diagnosis stories of patients. So far, a lot of them have talked about being dismissed or misdiagnosed before eventually coming to a diagnosis of Multiple Sclerosis.In a special bonus episode, Laura talks to her own neurologist, and the doctor who diagnosed her MS, Dr. Aaron Boster. Dr, Boster also happens to be one of the most recognizable MS experts in the world, due to his own YouTube channel (over 36,000 subscribers at the time of publishing this interview).Listen in as Dr. Boster talks about the...
2022-05-3118 minMS Diagnosis JourneyDevin Garlit: Not All Doctors Are Created EquallyOne day when Devin Garlit was at college, he woke up, got out of bed, and immediately fell over. After a few more days where this continued to happen, he saw the first in a series of doctors - one of whom had to refer to his old college textbooks for some guidance on what was going on!Although Devin's family had experience with MS and had expected the diagnosis, he still spent a lot of time trying to convince them that things would be different for him. In this episode, Devin recommends that all p...
2022-05-2612 minMS Diagnosis JourneyJenny Angus: Be Prepared and Educate YourselfAs an athletic teenager, Jenny Angus had volunteered at an event for MS and other neurological conditions. So when her first recognizable MS symptoms were dismissed in 2004, she was delighted. It would take her almost ten years before she received an official diagnosis - during which time her disease had been left to run unchecked.As you'll hear, following her prolonged (mis)diagnosis process Jenny no longer takes any chances when meeting with health professionals. She refuses to get emotional and goes in with a list of what she wants to achieve. In all of her journey...
2022-05-1917 minMS Diagnosis JourneyEd Tobias: Learning to Dance in the RainEd Tobias is a blogger and writer who formerly worked as an Associated Press reporter and broadcaster. He says that the only person who suspected MS when he was diagnosed was his wife, who was working as a Physiotherapist at the time. In this interview, Ed talks about his initial symptoms and the tests that were available to neurologists in 1980 - including his experience of the dreaded Hot Bath test! He also advises the newly diagnosed to act like a news reporter, weigh up all of the evidence, and not just accept the opinion of Dr. Internet.
2022-05-1213 minMS Diagnosis JourneyShari Short's Medical Mystery TourShari Short is a comedian and writer. Since her MS diagnosis in 2008, Shari has used humor to deal with MS, communicate about MS and cope with MS.In this interview, Shari talks about what was EVENTUALLY an unusually rapid diagnosis and the need for patients to seek out medical professionals who match their temperaments and whom they can trust. Remember, if you don't click with them, there are other healthcare providers!Connect with Shari on TwitterWatch clips from Shari’s One Woman Show, "It’s My Mother’s MS, I Just Have It"...
2022-05-0511 minMS Diagnosis JourneySue Casey - Grab The HappySue Casey is married with grown-up children and grandchildren and worked as a nursery nurse for many years. Not bad when you consider that she was diagnosed with MS in 1974, which means that, at the time of this recording, she has been living with it for nearly 50 years! At the time of Sue's diagnosis, there weren't any Disease Modifying Therapies available. Not only that, there weren't even many diagnostic tools available (apart from a truly horrific sounding procedure called a Pneumoencephalogram).Sue continues to live a happy life, despite the progression of her disease, and t...
2022-04-2815 minMS Diagnosis JourneyHeather - Be Your Own ChampionHeather is an actor, teacher, blogger, and Support Volunteer for the UK MS Society. She lives in England and was diagnosed with MS in 2014. As she says in this interview, Heather had no prior knowledge of MS at the time she began having symptoms. Eventually, she provided her own diagnosis (with help from Dr. Google) which was subsequently backed up by medical professionals. But this didn't happen without Heather having to fight.Read Heather's blog, Dinosaurs, Donkeys and MSConnect with Heather on Instagram, Twitter, and FacebookInterview by Laura Kolaczkowski
2022-04-2110 minMS Diagnosis JourneyMary Pettigrew - But You Look Fine!Mary Pettigrew is a writer from Dallas, Texas. She is also a blogger who specializes in poetry, essay, and narrative interviews. Following her MS diagnosis in 2001, she wanted to create a space where fellow MSers could meet up and share stories. In 2014 she launched MS Pals on Twitter, which eventually turned into a website of the same name.In this interview, Mary talks about her weird initial symptoms, and how contacts she had made in her career enabled a rapid diagnosis. She also talks about the reaction of her family and friends, as well as offering advice f...
2022-04-1414 minMS Diagnosis JourneyAnita Williams - Do Your Own Research, ResponsiblyAnita Williams’ advocacy work comes through her two roles at iConquerMS, a participant-driven research organization that aims to better understand, treat, and ultimately cure MS. She is the Co-Chair of the Engagement Committee, as well as being Co-Chair of the Committee for Equality, Diversity, and Inclusion. Anita also writes regular articles for MultipleSclerosis.net.In this interview, Anita tells of the unusual path her MS diagnosis took, and how the way in which the doctor delivered the diagnosis led to a passionate belief that patients should do their own research - but from established and reliable sources....
2022-04-0717 minMS Diagnosis JourneyLisa Emrich - Don't be Dismissed, Get a Second Opinion!Lisa Emrich is a patient advocate who has been helping patients educate and empower themselves since 2008. After being diagnosed with multiple sclerosis in 2005, Lisa learned firsthand the challenges of navigating the healthcare and insurance systems as a self-employed freelance musician in Washington, DC, performing on horn and piano.In this interview, Lisa talks about her initial symptoms, the long road to her eventual MS diagnosis, and the importance of building a health team that is on your side.Read Lisa’s writing on MultipleSclerosis.net and on her blogInterview by Laura Kolaczkowski...
2022-03-3113 minMS Diagnosis JourneySteve Woodward - The Relief of Getting a Positive DiagnosisSteve Woodward is a podcast editor from England, UK. He was diagnosed with Multiple Sclerosis in 2005.In this episode, Steve talks about the treatment he receives under the UK’s National Health Service, and why, despite the progressive nature of the disease, he thinks his MS diagnosis has made him a better person.Read Steve’s blogInterview by Laura KolaczkowskiEdited by Steve Woodward at The Podcasting EditorPodcast artwork by Jackie Zimmerman at Queen of GSDBackground Music is “Old Photos” by Olexy Support o...
2022-03-2516 minMS Diagnosis JourneyWelcome to the MS Diagnosis Journey podcastIn the chronic disease arena, most everyone is more than willing to share their story for their own benefit and that of others. At the core of each story is the diagnosis. Everyone has a story to tell, and every storyteller needs an audience. We invite you to join us for the Multiple Sclerosis Diagnosis Journey podcast, and listen to these unique stories. There's much to learn from each other by listening to these stories of diagnosis. By sharing their experiences with others, the MS Diagnosis Journey podcast will serve as a vehicle for healing an...
2022-03-1101 min
RealTalk MSPatient-Driven MS Drug Development with Laura Kolackzowski Patient-centered research is based on an understanding that patients themselves have unique perspectives that can help to mold, change, and improve the work of finding answers to clinical questions. My guest on the podcast is Laura Kolaczkowski, the co-Principal Investigator for iConquerMS. We're talking about the impact this people-powered research network is having on MS research, and how the first ever patient-driven MS drug development project came about. We'll also help you wade through the information and misinformation that surrounds whether people with MS should get a flu shot this season. We'll tell you about a study that demonstrates how balle...
2018-11-1335 min