MS Diagnosis Journey

MS Diagnosis Journey

In 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 and empowerment for the storyteller. Support of this project is made possible through the generosity of Janssen Pharmaceutical Companies of Johnson & Johnson.

Episodes

March 2, 2023 18 mins

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 everyo...

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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 fo...

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December 8, 2022 16 mins

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, Dam...

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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 u...

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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...

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November 17, 2022 12 mins

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...

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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 ...

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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 ...

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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 als...

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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 correc...

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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 collecti...

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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 ...

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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.

A...

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September 22, 2022 14 mins

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 t...

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September 15, 2022 18 mins

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...

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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 ...

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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 repre...

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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...

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August 18, 2022 14 mins

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 s...

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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...

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