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 [email protected]. 

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.