cidp

Herzlichen Dank an unsere WERBEPARTNER:

www.carnivoro.de Supplemente rund um die Carnivore Ernährung

Mit dem Gutscheincode CARNITARIER erhältst du 10 % Rabatt auf deinen ersten Einkauf! Affiliate Link: www.carnivoro.eu/carnitarierin

www.kaufnekuh.de Fleisch aus artgerechter Haltung mit fairen Preisen für Landwirte

Mit dem Gutscheincode CARNITARIER erhältst du 10 € Ermäßigung auf deinen Einkauf ab 50 €.

Folge 131: Tom – vom Rollstuhl wieder zurück in den Sport

Tom, 23, litt vor zwei Jahren an einer neurologischen Autoimmunerkrankung, die ihn an den Rollstuhl fesselte. Als Sportstudent musste er erleben wie, scheinbar ohne Ursache, innerhalb von wenigen Tagen eine Lähmung von den Füßen bis in die Hüfte auftrat. Monatelang musste er starke und übermäßig teure Medikamente einnehmen, die immer nur für kurze Zeit wieder auf die Beine brachten. Die Aussage einer der bekanntesten Neurologinnen war damals: “Sie werden nie wieder gesund werden.” Er hatte sich als Sportler immer vorbildlich “gesund” ernährt. Die offizielle Diagnose lautete: akut beginnende, schubförmig verlaufende, chronisch inflammatorische demyelinisierende Polyneuropathie, kurz CIDP. Man könnte die Erkrankung auch als Multiple Sklerose des peripheren Nervensystems bezeichnen. Zuvor gab es auch die Diagnose Guillain-Barré-Syndrom GBS.

Dank zweier Ärzte, nämlich Bastian Hölscher (Episode 127) und Dr. Dirk Lemke wurde er mit Paleo und dem Coimbra-Protokoll, was eine Vitamin-D-Hochdosis-Therapie ist, wieder hergestellt. Inzwischen macht er Carnivore und es geht ihm damit am besten.

Er studiert heute Medizin mit einer Leidenschaft für Ernährungsmedizin und NeuroMovement. Sein Wissen teilt er auf dem Instagramaccount @numbneurotherapy auf Englisch.

Fleischzeit ist der erste deutschsprachige Podcast rund um die carnivore Ernährung. Hier erfahrt ihr Tipps zur Umsetzung des carnivoren Lifestyles, wissenschaftliche Hintergründe zur Heilsamkeit sowie ökologische und ethische Informationen zum Fleischkonsum. Eine Übersicht über alle Folgen findet ihr hier: www.carnitarier.de/fleischzeitpodcast

Andrea Siemoneit berichtet nach über drei Jahren carnivorer Ernährung über ihre Erfahrungen und Erkenntnisse. Außerdem interviewt sie andere Carnivoren und Wissenschaftler.

Ihr findet sie auf Instagram unter @carnitarierin

Handbuch der Carnivoren Ernährung: www.carnitarier.de/shop

Haftungsausschluss:

Alle Inhalte im Podcast werden von uns mit größter Sorgfalt recherchiert und publiziert. Dennoch übernehmen wir keine Haftung für die Richtigkeit, Vollständigkeit oder Aktualität der Informationen. Sie stellen unsere persönliche subjektive Meinung dar und ersetzen auch keine medizinische Diagnose oder ärztliche Beratung. Dasselbe gilt für unsere Gäste. Konsultieren Sie bei Fragen oder Beschwerden immer Ihren behandelnden Arzt.

Haftungsausschluss:

Alle Inhalte im Podcast werden von uns mit größter Sorgfalt recherchiert und publiziert. Dennoch übernehmen wir keine Haftung für die Richtigkeit, Vollständigkeit oder Aktualität der Informationen. Sie stellen unsere persönliche subjektive Meinung dar und ersetzen auch keine medizinische Diagnose oder ärztliche Beratung. Dasselbe gilt für unsere Gäste. Konsultieren Sie bei Fragen oder Beschwerden immer Ihren behandelnden Arzt.

As a successful and resilient attorney, Rorey was blindsided by the onset of debilitating muscle weakness and fatigue. After months of countless tests, he found a sense of relief when doctors diagnosed him with chronic inflammatory demyelinating polyneuropathy (CIDP). He navigated the complications of a condition that is not always visible or understood by others. Looking to be an active partner in his treatment, Rorey used his analytical skills to do research and find ways to manage his condition. With family support and an amazing healthcare team, he cultivated grace and acceptance for his condition. Learning to not only manage his physical limitations, Rorey has also found a new perspective on his overall health and overcoming challenges through his CIDP journey.

See omnystudio.com/listener for privacy information.

Martine Hackett returns with a new season of “Untold Stories: Life with a Severe Autoimmune Condition.” Hear from people forging new paths after diagnosis, and learn how they build community and evolve their outlook on life. We’ll learn more about life with myasthenia gravis (MG) and chronic inflammatory demyelinating polyneuropathy (CIDP). Join us starting Wednesday, December 13th

See omnystudio.com/listener for privacy information.

In this special bonus episode, we’ll spotlight one of the many rare conditions that deserves more attention and resources. Chronic inflammatory demyelinating polyneuropathy, more commonly known as CIDP, is a rare neurological condition that causes progressive weakness, impaired mobility, and reduced sensation in the arms and legs. Guests, Scott and Crystal, discuss how each of their lives were drastically impacted by CIDP. When Scott, a choreographer, was diagnosed, he had to learn to channel his creativity into new mediums. While Crystal, a former pharmaceutical executive who was well-versed in rare conditions, found herself diagnosed with one. Despite their different backgrounds, they’ve both found that compassion, community, and continually engaging in proper care has taught them how to cope with the adjustments they have had to make in their lives.

See omnystudio.com/listener for privacy information.

(00:32):

Before we get into the test itself, Dr. Mills, I'd love for you to tell our audience just a little bit about yourself, your background, your role here at Mayo clinic.

(01:41):

Can you just give our audience a brief overview of the assay?

(05:20):

I really appreciate how the lab has looked at other approaches and decided that this is the best one. Is that an accurate kind of summary.

(06:16):

They'll get the result that they need with just one test, right?

(07:03):

So can you start with helping our physicians understand which patients should get this testing?

(09:05):

You said these immune mediated neuropathies, this test is going to be important for all of those to help, to identify the distinct phenotype of neurofascin155, right, Dr. Mills?

(09:43):

I know you mentioned that these are rare disorders, but how common is the neurofascin antibody in that phenotype?

(11:27):

Dr. Mills, are there any other alternative options regarding this kind of testing?

(13:30):

How is the positive or negative result going to drive the physician in a certain direction regarding prognosis or treatment? Can you share some of that?

(14:48):

Do you think there are any prerequisites that physicians should be testing for these particular things before they would order our neurofascin test or does the neurofascin come pretty early on in the differential?

(15:36):

Can you elaborate a little more on the next steps? What does a more aggressive treatment plan? What does that mean?

(16:09):

We've talked about a lot of the important items, the assay and how it's designed, how this is going to help patient care and how it's unique, but what's your key takeaway here? What are you most excited about?

May is GBS-CIDP awareness month, and what better way for us to help do our part here on the podcast than to talk with a fellow survivor of this rare disease, and get his take on his experiences during diagnosis, treatment, and how life has changed for him since.

Jeremy Oster reached out to me a couple of months back, when he was looking for connections to other survivors of GBS, and came across the podcasts I recorded about my experience. We chatted through email and on the phone, swapping stories, struggles, things we've learned along the way of our healing; and I thought it would be cool to bring him on the podcast to continue our chat during GBS-CIDP awareness month.

Jeremy was like so many before the onset of GBS; married, children, successful career in both technology and sales, and while he had his share of struggles personally and professionally, he was primarily living life the way so many of us do each day. Then out of the blue, everything changed, and ever since his life has taken on a new normal in a way he could have never imagined.

During our chat:

• Jeremy breaks down what exactly GBS is, and what it feels like to live with it each day both physically and emotionally.
• He shares what his life was like on a daily basis, an what happened just before Guillain Barre set in.
• The importance of moving past "how did I get GBS" and focusing on "what am I going to do about it".
• The toll this disease can take on a spouse and family, during treatment, recovery, and life afterward.
• Finding your new normal, and approaching life with the right mindset so you can be proactive in your healing, rather than just resigning yourself to what you think will never change.

If you'd like more information on this rare disease, related conditions and variants, treatment options, and how you can help support research, please head over to GBS-CIDP.org, the official foundation website to see how you can get involved.

To check out my other podcasts on this topic, check out "The Diagnosis that Changed My World", and my "One Year Later Update Episode" .

If you enjoy these podcasts would you consider doing 3 easy things for us?

1. Share it with one person who might find it helpful.
2. Leave a review on your favorite podcasting app.
3. Subscribe so you never miss an episode.

That’s it…Super Easy and it would mean the world to us.

If you want to go a step further, we have a special Thank You just for You!

I originally shared my experience with GBS, in February 2018, in episode #58. That podcast took me quite a long time to record and the blog post even longer to write since it was right in the early stages of healing and I was still coming to terms with what happened. Still, I was compelled to write and speak my story as best I could, mainly because that's one of the ways I cope with things of this severe nature. You can check out that episode and detailed blog post, here.

During the last year, I've spoken to a handful of survivors of Guillain Barre Syndrome, and participate regularly in some Facebook groups full of survivors of GBS or CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) who all have varying experiences with this disease and its variants. I've kept in contact with some of them regularly, and inparticular with a person I invited to become a guest with me here on this episode, Mary Catherine (MC).

MC is the Founder and CEO of Coffee and Cocktails with MC, a nonprofit organization whose mission is to help promote, represent, and support local, family-owned, and small businesses through a variety of media and social opportunities, to help further their exposure. She is also a blogger at MyBlindLife.com, where she documents her new-normal life as a wife, mother, small business advocate and survivor of  GBS and a medical incident that left her visually impaired. 

MC and I talk about our experiences with Guillain Barre, from how things were before the disease hit, how we both contracted it, our treatment experiences, and the ways we've worked through recovery since.

We talk about how much we've learned and the attitude and mindset we've had to embrace in order to heal from this dreaded disease.  The struggles, the wins, and everything in between have helped shaped our individual lives since and also helped to give us a message to share with others. As you'll hear, and if you're a listener of this podcast you know already, the power of sharing your story can be an amazing means of inspiring and validating. It's something I try to embrace, and MC also is a big believer in finding ways to use her experiences to help others.

I hope you'll enjoy this episode, and take heart in knowing that throughout the recovery from this ordeal, one of the similarities you'll hear is that during healing, it's important to surround yourself with a good support system, both in person and online. The power of support is crucial to healing and whomever you can get to help you, virtually or otherwise, will make things so much better...especially during the dark, difficult times that will inevitably come but will also give way, in time, to new possibilities and hope.

Be sure and check out Coffee&CocktailswithMC to learn more about the work MC Derin is doing and the ways she is using her experiences to help others.

-Matthew Pappas, CLC, MPNLP

Guillain Barre Syndrome Survivor.

All conversation and information exchanged during participation on the Beyond Your Past Podcast, on BeyondYourPast.com, and BeyondYourPastRadio.com is intended for educational and informational purposes only. Nothing on these podcasts or posted on the above-mentioned websites are supplements for or supersedes the relationship and direction of your medical or mental health providers.