MS Diagnosis Journey

Jennifer 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 their own diagnosis to be persistent and keep detailed notes of their symptoms, in order to make it easier for doctors to join the dots.

Visit A Couple Takes on MS and listen to the podcast 
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 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 steering committee of the iConquerMS RIDE Council (Research, Inclusion, Diversity, Equity) because she does not want others to experience this delay in MS diagnosis or treatment.

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.

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 of her condition, MS is something that she can live with.

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.

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 a lot of humor. And even though optic neuritis took the sight in one of his eyes, Scott now works as a photographer. 

Visit Scott James Photography
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 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 out there to help you along your journey.

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.

Self-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 advises people to get to know their MS as if it's a person and remember that, even at rock bottom, going upwards is always an option.

Visit Jackie at jackiezimmerman.co and her professional website Queen of GSD
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.

At 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 interests are Indigenous Disability Studies and Indigenous Perspectives of Difference and Differently-Abled Peoples.

As you'll hear, Dr. Robinson feels grateful for the opportunities she continues to have to integrate her health and mobility issues into her research specialisms. She has been able to adapt to situations, make the most of what has been presented to her, and find joy in the things that she still can do.

Check out Dr. Robinson's profile at the University of Northern British Columbia
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.

Teresa 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 go through in life is about MS. She advises anyone at the start of their own journey to be relentless in finding somebody who will listen and treat your whole person.

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.

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 her. 

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.

Looking 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 by yourself. So reach out to the people around you. 

Connect with Lucy on Instagram 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.