MS Diagnosis Journey

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.