MS Diagnosis Journey

The 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 three most common initial symptoms which can lead to an MS diagnosis, the standard tests that patients can expect to experience, and his advice for anyone who might be at the start of their own diagnosis journey.

Visit Dr. Aaron Boster's YouTube channel
Connect with Dr. Boster on Twitter and on his Facebook page

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.

One 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 people with suspected MS should advocate for themselves, and find a Neurologist that specializes in MS, if possible.

Read Devin's articles on MultipleSclerosis.net
Connect with Devin on Facebook and 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.

As 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, she says that educating yourself is key! 

Visit Jenny's website, My MS Poltergeist

Read Jenny's article on MultipleSclerosis.net 

Connect with Jenny on Facebook, Twitter, and 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.

Ed 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.

Read Ed's articles on Multiple Sclerosis News Today and his own blog, The MS Wire  

Buy The Multiple Sclerosis Toolbox by Ed Tobias 

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.

Shari 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 Twitter

Watch clips from Shari’s One Woman Show, "It’s My Mother’s MS, I Just Have It" - Mom and Her Support Group and Don’t Talk to Strangers; plus her series of MS Award Videos

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.

Sue 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 this interview is genuinely uplifting and inspiring. 

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.

Heather 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 MS

Connect with Heather on Instagram, Twitter, 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.

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 for the newly diagnosed.

Visit MSpals

Read Mary's writing at musettemary.com

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.

Anita 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.

Read Anita’s writing on MultipleSclerosis.net

Visit iConquerMS 

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.

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 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.