MSMS: The Many Stories of Multiple Sclerosis
Welcome to MSMS: The Many Stories of Multiple Sclerosis
Here, you'll hear real stories from real people—Australians and occasionally others from around the world—sharing their experiences of life with Multiple Sclerosis (MS).
The podcast began with Colleen's hope to build greater understanding of Hematopoietic Stem Cell Transplant (HSCT), by spotlighting the stories of Australians living with MS who had undergone this intense and often misunderstood procedure.
What started as a focus on HSCT has since grown to include a range of conversations relevant to Australians living with MS—honest, heartfelt stories that speak to the reality of this progressive disease.
By sharing our experiences, we support one another, reduce the isolation that so often comes with MS, and foster a sense of community—while also raising much-needed awareness.
The first series of MSMS centres on HSCT—the decision-making process, the challenges faced, and the individual outcomes that follow.
In Episode One, you’ll meet your host Colleen and her husband Kel, as they take you on their extraordinary journey to Moscow, Russia. It was there, just 5 years married and desperate to stop the rapid progression of her MS, that Colleen underwent HSCT.
What followed was an ordeal of unexpected challenges—physical, emotional, and logistical. Through it all, Colleen the patient, and Kel her steadfast champion.
Their story has been shared in Australian newspapers, radio and TV—but here, in their own words, Colleen and Kel share even more of their remarkable story, behind the headlines.
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Disclaimer:
This podcast is not intended to replace professional medical advice.
The views expressed in this podcast are those of the host or guest(s).
No story told, view expressed or opinion voiced, written or otherwise shared in any episode of this podcast is to be taken as medical advice, including when related in an episode as a professional opinion or professional advice given.
Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health or medical condition.
Content Warning:
Multiple Sclerosis is an unpredictable condition and the conversations and stories in all episodes of this podcast will contain reference to MS symptoms as well as situations experienced before, during or after HSCT - some of which may be disturbing or upsetting for some. In Australia https://beyondblue.org.au and Lifeline on 13 11 14 or https://www.lifeline.org.au are organisations which provide assistance - do please look after yourself.
MSMS: The Many Stories of Multiple Sclerosis
Navigating Overseas Stem Cell Treatments : Colleen Shares Her Perspective (a short episode)
Overseas Stem Cell Treatments for MS
In this episode, I speak from my personal experience of exploring stem cell treatments in the hope of slowing the progression of my MS.
I am not medically qualified, so I speak from the perspective of someone who has actively searched for options and tried to make sense of what I found was being claimed.
Ultimately I underwent HSCT (Hematopoietic Stem Cell Transplant) in 2017, at that time available in reputable hospitals in Mexico, Singapore, and Russia.
Treatments offered overseas today can vary greatly.
Some overseas stem cell 'packages' offer other wellness or support therapies eg physiotherapy or acupuncture, alongside the stem cell component.
Others combine stem cell injections with added procedures such as vein "unblocking"—I believe that procedure may be CCSVI (chronic cerebrospinal venous insufficiency)—which was trialled in relation to MS around 2013. MS Australia advise on their website that the results of that trial were disappointing:
🔗 MS Australia – Disappointing Results from CCSVI Trial
To help those thinking about these treatments, I’ve created a simple infographic with five questions to consider. These questions are a starting point only. There is much to weigh up, and it’s essential to seek advice from qualified medical professionals before making any decision about your health treatments.
Many are keen to hear the truth around the various MS stem cell procedures being offered - if you are in Australia and have had a stem cell treatment for MS, and would like to share your story on the podcast please email msmspodcast@proton.me - thank you, Colleen
You can join Colleen and other Australians living with MS in this podcast's Facebook group which was originally created to support those interested in HSCT and now exists to facilitate discussion on all issues relevant to MS.
Multiple Sclerosis and HSCT Australia - Facebook group
PS: I'd appreciate your donation to help in maintaining this podcast - if you could buy me a coffee or two please (donate $5, it's not real coffee! thank you!) - Colleen
Buy Colleen a Coffee - thank you!
Disclaimer:
This podcast is not intended to replace professional medical advice.
The views expressed in episodes of this podcast are those of the host or guest(s) and are not intended to replace professional medical advice.
No story told, view expressed or opinion voiced, written or otherwise shared in any episode of this podcast is to be taken as medical advice, including when related in an episode as a professional opinion or professional advice given.
Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health or medical condition.
Content Warning:
Multiple Sclerosis is an unpredictable condition and the conversations and stories in all episodes of this podcast will contain reference to MS symptoms as well as situa...