Podcasts about lemtrada

A quick scan of the news on any given day should remind all of us that natural disasters can strike anywhere at any time. Whether it's massive snowstorms, earthquakes, wildfires, hurricanes or floods, no one is immune when Mother Nature chooses to act up. That's why being prepared for a natural disaster is important for everyone. And if you're living with MS, it's especially important for you to have your family's emergency preparedness plan in place. Senior Medical Advisor to National Disaster Operations at the American Red Cross, Mary Casey-Lockyer, joins me to talk about the things that people living with MS should include in their emergency preparedness plan. We're also talking with Dr. Aaron Kesselheim, a researcher at Harvard's Brigham and Women's Hospital. And if you're on Lemtrada, Dr. Kesselheim could use your help. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Disaster Preparedness  :22 If you're on Lemtrada, Dr. Aaron Kesselheim could use your help  1:43 Mary Casey-Lockery discusses disaster preparedness for people living with MS  10:49 Share this episode  31:22 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/274 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Take the iConquer MS Caregiver Survey https://realtalkms.com/caregiver Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 274 Guest: Dr. Aaron Kesselheim and Mary Casey-Lockyer Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy

Multiple Sclerosis News Today's multimedia associate, Price Wooldridge, reads an article about how the FDA has cleared eight more SPMS patients for treatment with foralumab nasal spray, under a special access program. He also reads “Crossing the Lemtrada Finish Line”, a column by Ed Tobias. =================================== Are you interested in learning more about multiple sclerosis? If so, please visit: https://multiplesclerosisnewstoday.com/ ===================================== To join in on conversations regarding multiple sclerosis, please visit: https://multiplesclerosisnewstoday.com/forums/

Multiple Sclerosis News Today's multimedia associate, Price Wooldridge, discusses how in an unexpected discovery, scientists found that increasing the activity of PDGFRA reduces the production of myelin in the nervous system; and reads the column by Ed Tobias, MS Wire, “My Lemtrada Treatment, 5 Years Later.” =================================== Are you interested in learning more about multiple sclerosis? If so, please visit: https://multiplesclerosisnewstoday.com/ ===================================== To join in on conversations regarding multiple sclerosis, please visit: https://multiplesclerosisnewstoday.com/forums/

Leann Stickel, a fellow MS'r, shares her perspective of tackling this disease. She is an eternal optimist and seeks to live her best life. Leanne is also the founder of the kid's triathlon, Tri 2 Beat MS. As a result of her fundraising, she now sits on the board of The Central Illinois MS Council. Leann is also a life coach who helps women dealing with chronic illness to feel happy & hopeful. www.LeannStickel.com FB Group: Not defined By Chronic Illness http://www.tri2beatms.com/ Instagram: @iamleannstickel www.thrivingoversurvivingpodcast.com Instagram: @thrivingoversurvivingpodcast

Leann Stickel, a fellow MS'r, shares her perspective of tackling this disease. She is an eternal optimist and seeks to live her best life. Leanne is also the founder of the kid's triathlon, Tri 2 Beat MS. As a result of her fundraising, she now sits on the board of The Central Illinois MS Council. Leann is also a life coach who helps women dealing with chronic illness to feel happy & hopeful. www.LeannStickel.com FB Group: Not defined By Chronic Illness http://www.tri2beatms.com/ Instagram: @iamleannstickel www.thrivingoversurvivingpodcast.com Instagram: @thrivingoversurvivingpodcast

Prof. Heesen erklärt, wie die Stammzelltherapie abläuft, welche Chancen und Risiken damit einhergehen und wer an der Studie teilnehmen kann. In Folge 101 vom Podcast steht die Stammzelltherapie für MS-Patienten im Fokus. Prof. Christoph Heesen vom UKE Hamburg hat bereits einige Erfahrungen mit der Therapieform gesammelt und gibt uns einen umfassenden Einblick in Ablauf, Chancen und Risiken der Behandlung. Er erläutert die Rahmenbedingungen der Studie, die frisch angelaufen ist und für wen sie in Frage kommt. Ich habe versucht die Antworten von Prof. Heesen auf meine Fragen in Textform bestmöglich wiederzugeben. Vorstellung Prof. Dr. med. Christoph Heesen ist Oberarzt & Leiter der MS-Ambulanz am UKE Hamburg und ausgebildeter Facharzt für Neurologie.  Wichtigste Stationen bis zur jetzigen Position? Ich habe Medizin in Marburg und Kiel studiert. Anschließend war ich ein Jahr klinisch tätig in Bremen. Es folgte ein kurzer Ausflug nach London. In meiner Doktorarbeit ging es um Autoimmunerkrankungen. Zum Start in den Klinikalltag kamen gerade die ersten MS-Therapien auf den Markt. Seitdem beschäftige ich mich auch mit den kritischen Kommunikation um die Therapien herum und mit dem Therapieziel der Behandlung. Persönliche Motivation für Ihren Beruf? Faszination der Neurologie und Immunologie. Im Studium kam dann der Bereich der Psychoneuroimmunologie dazu. Bis heute ist das Interesse groß zu verstehen, wie psychischer Stress auf die Multiple Sklerose wirkt und wie man im Umkehrschluss Patienten dabei helfen kann, diesen negativen Einfluss auf die Erkrankung zu reduzieren. Stammzelltherapie Wann macht eine Stammzelltherapie bei MS-Patienten Sinn? Für wen kommt sie in Frage? Die Stammzelltherapie ist ein Verfahren, das für hoch-aggressive Verläufe geeignet ist. Also für eine hochaktive schubförmige MS mit vielen Schüben im Jahr, bleibenden Beeinträchtigungen, einem jungen Lebensalter und einer kurzen Krankheitsdauer der Patienten. Lebensalter idealerweise unter 40 Jahren. Krankheitsdauer unter zehn Jahren. Mit drei Schüben im Jahr. Mit einer Beeinträchtigung nach zwei bis drei Jahren, dass man nicht mehr unbegrenzt gehen kann. Auch progrediente Verläufe kommen in Fragen, falls sie noch nicht zu fortgeschritten sind. Wichtig: Die verabreichten Stammzellen sorgen für einen Neustart des Immunsystems. Sie können weder das Gehirn reparieren noch Nerven wieder aussprießen lassen. Man zerstört das komplette Immunsystem, um es anschließend wieder neu aufzubauen. Damit verschwindet auch das komplette immunologische Gedächtnis. Impfungen müssen neu gegeben werden. In späteren Stadien der Erkrankung, wo Entzündungen nicht mehr so wichtig sind, sondern es um Folgeschäden der zerstörten Nerven geht und Degeneration stellt diese Art der Behandlung nur noch ein Risiko dar und kann keinen Nutzen mehr bieten. Wie läuft eine Stammzellentherapie bei MS-Patienten ab? Es gibt eine autologe und eine allogene Stammzelltherapie. Bei der autologen Stammzelltherapie erhält man seine eigenen Stammzellen zurück, bei der allogenen Spenderstammzellen. Bei MS-Patienten werden die eigenen Stammzellen wieder verabreicht. Dadurch besteht zwar das Risiko die MS wieder zurückzubekommen, aber die Risiken und Komplikationen sind viel geringer. Zuerst werden die Stammzellen gesammelt. Das erfolgt durch eine sogenannte Mobilisation. Dafür werden die Stammzellen aus dem Knochenmark ausgeschwemmt. Man gibt eine Chemotherapie, typischerweise Cyclophosphamid oder Endoxan. Beide wurden bereits vor 30 Jahren als Therapie bei Multipler Sklerose ausprobiert. In einer geringen Dosis aktivieren sie die Stammzellen, diese wandern dann vom Knochenmark ins Blut. Mit einer Abfilterungsanlage werden die Stammzellen in der Apharese gesammelt, die ähnlich der Plasmapherese oder Plasmaspende funktioniert. Anschließend werden die Stammzellen aufbereitet, geprüft ob alle funktionieren, eingefroren und wieder aufgetaut. Denn es muss sichergestellt werden, dass der MS-Patient funktionierende Stammzellen zurückerhält, alles andere wäre hochgradig gefährlich, da vorher ja das komplette Immunsystem platt gemacht wurde. Sehr gute Standards reduzieren dieses Risiko gegen Null. Danach ist der Patient wieder zuhause. Sprich erst Zellen mobilisieren, herausfiltern, aufbereiten und einfrieren. Danach kommt der Patient wieder zur eigentlichen Therapie. Diese beginnt mit der sogenannten Konditionierung. Das heißt, der Patient bekommt eine ganz massive Immunsuppression oder Chemotherapie, die das Immunsystem kaputtmacht. Das ist derzeit ebenfalls Cyclophosphamid oder Endoxan. Zusätzlich gibt man einen bestimmten Antikörper. Nun hat der Patient kein Immunsystem mehr. Würde man dem Patienten nun keine Stammzellen geben, würde dieser Patient innerhalb weniger Wochen oder Monate an einer Infektion versterben. Deshalb bekommt man seine aufbereiteten Stammzellen nach ein paar Tagen wieder, nach ca. einer Woche. Die Stammzellen wachsen dann an. Das dauert ca. eine Woche bis zehn Tage. Das Immunsystem erholt sich wieder. Bei optimalem Verlauf dauert dieser Teil der Therapie drei Wochen. In Hamburg lag der Durchschnitt bei drei bis fünf Wochen. Anschließend geht der Patient nach Hause. Das Immunsystems muss wieder aufgebaut werden. In den ersten drei Monaten muss man sehr vorsichtig sein und jede Woche zum Blutbildcheck. Man muss verschiedene Virus- und Pilzmittel nehmen, die den Körper vor Infektionen schützen. Ein Jahr braucht das Immunsystems ungefähr, um sich wieder aufzubauen. Welche Chancen und Gefahren stehen im Zusammenhang mit einer Stammzellentherapie? Aus den bisherigen Daten kann man sehen, dass die Entzündungsaktivität deutlich reduziert werden kann. Mehr als bei allen anderen hochwirksamen Therapien. Angestrebt wird eine nicht mehr nachweisbare Krankheitsaktivität, also keine Schübe, keine neuen Läsionen im MRT, keine Progression. Dieses ambitionierte Ziel bekommt man mit den Standardtherapien bei 40% der Patienten hin. Bei der Stammzelltransplantation schafft man es bei 60-80%, vielleicht sogar 90% der Patienten. Die Therapie hat ein hohes Potenzial, allerdings gibt es für die Stammzelltherapie bisher nur wenige Daten, eine viel kleinere Studienlage. Zusätzlich bietet die Therapie bisher für ein Drittel der Patienten die Chance, anschließend sogar besser zu werden. Die Patienten konnten sich erholen, weil das Immunsystem nun nicht mehr ständig neue Angriffe von der MS erlebte und Zeit hatte, seine körpereigenen Reparaturmechanismen zu fahren. Deshalb sind jüngere Menschen ideale Kandidaten, weil sie dieses Partizipationspotenzial noch haben. Demgegenüber stehen die Risiken, weshalb es viele Vorbehalte in Deutschland gegen dieses Verfahren gibt. Früher starben 3-5% der Patienten, weil man noch toxischere Chemotherapien einsetzte und ältere Patienten einschloss, die noch andere Erkrankungen hatten. Heutzutage liegt das Risiko bei unter 1%. Aber wichtig bis zu 1% therapiebezogene Sterblichkeit bleibt als Risiko bestehen. Es ist eine risikoreiche Therapie. In Hamburg wurden bisher 20 Patienten behandelt, keiner ist gestorben. Eine neue englische Serie mit 120 Patienten hatte drei Todesfälle. Allerdings waren da auch Patienten Mitte 60 dabei und mit Vorerkrankungen. Alle drei verstorbenen Patienten hatten Vorerkrankungen. In Deutschland ist die Grenze bei 40 bis 50 Jahren. Man kann außerdem sekundäre Autoimmunerkrankungen bekommen (5-6%). Meistens sind diese aber gut beherrschbar. Zusätzlich können sekundäre Krebserkrankungen auftreten ca. 3-4%. Und es kann zu Unfruchtbarkeit kommen für Männer, wie Frauen. Man sollte Eizellen bzw. Spermazellen einfrieren, um sich den Kinderwunsch später dennoch erfüllen zu können. Wie ausführlich werden in Frage kommende MS-Patienten über die Behandlung informiert und wie lange dauert der Entscheidungsprozess üblicherweise? Die Patienten, die sich in Hamburg melden, sind in der Regel sehr gut informiert. Teilweise über die Facebook-Gruppe der MS-Transplantierten. Somit führen wir meist ein erstes Gespräch, geben dann Bedenkzeit. Und beim zweiten Gespräch, wenn die Patienten sich immer noch sicher sind. In der Regel ist es für die Patienten relevant, deren normales Leben nicht mehr funktioniert, die alles andere an MS-Therapien ausprobiert haben, mit nur geringem Erfolg. Dann stehen Risiko und Nutzen in einem sinnvollen Verhältnis. und es geht eher darum, wie man an das Verfahren kommt. Für diese Patienten ist es eine Befreiungsschlagchance mit einem gewissen Restrisiko. Wie lange dauert die eigentliche Behandlung? Ungefähr ein Jahr. Die Mobilisation dauert eine Woche. Die Stammzelltherapie selbst drei bis fünf Wochen stationär. Daran schließen sich drei Monate Nachbeobachtung an. Also vier Monate ernstere Behandlungsphase. Anschließend kann man in die Reha oder lieber erst ein Jahr später, um das Immunsystem noch ein bisschen zu schonen, da dort schließlich mehr Kontakt mit anderen Menschen stattfindet. Das ist eigener Ermessensspielraum. Welche Reha-Maßnahmen oder anderen regenerativen Behandlungen folgen im Anschluss an die Stammzellentherapie? Nichts Spezifisches. Viele Patienten sind dann erstmal richtig schlapp und fühlen sich schlechter. Schließlich ist die Behandlung sehr intensiv und anstrengend für den Körper. Andere erholen sich schneller und trainieren viel zuhause. Das hilft auf jeden Fall. Allgemeine MS-spezialisierte Reha macht Sinn. Wie ist es, wenn man kleinere Kinder hat? Zum Glück übertragen Kinder in der Regel keine massiv gefährlichen Krankheiten. Wenn man es schafft, in den ersten drei Monaten eine gewisse Distanz einzuhalten oder das Kind eventuell zuhause zu behalten, wird das Risiko reduziert. Allerdings sollte man die psychische Belastung der Trennung auch nicht unterschätzen. Also abklären, diskutieren und dann individuell entscheiden. Wer trägt die Kosten für eine Stammzelltherapie bei MS in Deutschland? Grundsätzlich übernehmen die Krankenkassen in Deutschland die Kosten nicht, weil es keine etablierte Therapie ist. Eventuell kann man seine Krankenkasse davon überzeugen, die Kosten zu übernehmen. Ansonsten gibt es die Möglichkeit der Selbstfinanzierung. Das sind mindestens 35.000 bis 40.000 Euro in Deutschland. Man kann auch in die Schweiz, nach London, Mexiko oder Moskau gehen. In Hamburg wird nur die Behandlung über Studie angeboten bzw. bei Übernahme der Kosten durch die Krankenkasse. Was ist der Unterschied für MS-Patienten, wenn sie an der Studie zur Stammzelltherapie teilnehmen? An der Studie können zunächst nur Patienten im schubförmigen Verlauf teilnehmen, die eine Therapieversagen mit den Standardtherapien haben, unter 50 Jahre sind und die MS nicht länger als 10 Jahre haben. In der Studie wird die Stammzelltherapie mit Lemtrada oder Ocrevus verglichen, um aufzuzeigen, dass die Kosten der Stammzelltransplantation geringer sind, als mit den Standard hochwirksamen Medikamenten, um letztendlich hoffentlich eine Kostenübernahme für alle Patienten zu bewirken nach erfolgreich abgeschlossener Studie. Das heißt, man hat 50% Chancen die Stammzelltherapie zu erhalten, man kann aber auch in der anderen Gruppe landen und entscheidet dann gemeinsam mit seinem Arzt, ob man Lemtrada oder Ocrevus nimmt. Es wäre sehr ungünstig, wenn zu viele Patienten abspringen, bloß weil sich nicht die Stammzelltransplantation erhalten haben. Wenn die Patienten allerdings unter Lemtrada oder Ocrevus schlechter werden würden und der Behandlungserfolg ausbleibt, würden sie ebenfalls transplantiert werden. Bei einer ähnlichen Studie aus den USA wurden ungefähr die Hälfte der Patienten letztendlich doch transplantiert, weil die anderen Therapien nicht ausgereicht haben. Generell muss man zu vielen Kontrolluntersuchungen kommen. Anfangs alle drei Monate, später zweimal jährlich bis einmal jährlich inklusive MRT und Gehirnleistungstest, um die Langzeiterfolge zu messen. 50 Patienten werden für die Studie benötigt, das ist in 5 Jahren möglich. Realistischerweise könnte es in fünf bis zehn Jahren zur Kassenleistung werden, wenn es so gut läuft, wie erwartet. Gibt es weitere MS-Zentren in Deutschland, wo eine Studienteilnahme möglich ist? Die Uniklinik Mannheim ist dabei, das MS-Zentrum Dresden ist frisch dazugekommen und Düsseldorf könnte mit hinzukommen. Patienten sollen auch aus einem größeren Radius zu den vier teilnehmenden Kliniken kommen. Was sollten interessierte MS-Patienten machen, um abzuklären, ob sie geeignete Kandidaten für die Studie sind? Sinnvollerweise sollten sich interessierte Patienten momentan in Hamburg melden unter . Gerne auch telefonisch. Zunächst würden wir die Kerninformationen klären, ob der Kandidat passt und alle wichtigen Informationen zur Aufklärung hat. Von den Patienten, die sich melden, sind 20-30% geeignet. Sobald, die ersten zwei drei Patienten in Hamburg in Behandlung sind, können bestimmt auch die anderen Zentren aktiv loslegen. Und falls es viele Anfragen zur generellen Therapie gibt, die dann aber größtenteils nicht in Hamburg durchgeführt werden, können hoffentlich auch die anderen Zentren mit bei der Aufklärung und Information der Patienten mithelfen. Blitzlicht-Runde Vervollständigen Sie den Satz: „Für mich ist die Multiple Sklerose… eine sehr unterschiedlich verlaufende Krankheit, die eine hochindustrialisierte Therapie braucht.“ Welche Internet-Seite können Sie zum Thema MS empfehlen? DMSG Hamburg und unsere MS-Ambulanz Seite am UKE Hamburg. Welchen Durchbruch in der Forschung und Behandlung zur MS wünschen Sie sich in den kommenden 5 Jahren? Die Etablierung der Stammzelltherapie. Das Sport- und Ausdauertraining mehr ins Bewusstsein rückt und sich für die Regeneration und Prävention etabliert. Möchten Sie den Hörerinnen und Hörern noch etwas mit auf dem Weg geben? Finden sie ihren eigenen Weg mit der MS. Und suchen sie sich Ärzte, die sie dabei unterstützen. Wie erreicht man die MS-Ambulanz am UKE in Hamburg? Am besten per E-Mail: multiplesklerose[at]uke.de oder telefonisch 040-7410-54076. +++++++++ Vielen Dank an Prof. Christoph Heesen für das geführte Interview und den umfassenden Ein- und Überblick zur Stammzelltransplantation bei Multipler Sklerose. Bestmögliche Gesundheit wünscht dir, Nele Mehr Informationen rund um das Thema MS erhältst du in meinem kostenlosen Newsletter. Hier findest du eine Übersicht zu allen bisher veröffentlichten Podcastfolgen.

Multiple Sclerosis News Today's columnist, Jenn Powell, discusses how Emerald Health is preparing for phase 2 trial of EHP-101 for relapsing forms of MS. Multiple Sclerosis News Today's multimedia associate, Price Wooldridge, reads “An Update on My Lemtrada Journey 3 Years After Round 2”, a column by Ed Tobias. ===================================== Treatment for Relapsing MS Progression | MAYZENT® (siponimod) Read about MAYZENT, a once daily pill that can significantly slow down disability progression in people with relapsing MS. See full prescribing & safety info. https://www.mayzent.com/?utm_source=changeinrms&utm_medium=vanityurl&utm_campaign=novartis_mayzent_2020&utm_content=soundcloud ===================================== Are you interested in learning more about multiple sclerosis? If so, please visit: https://multiplesclerosisnewstoday.com/ ===================================== To join in on conversations regarding multiple sclerosis, please visit: https://multiplesclerosisnewstoday.com/forums/

In this episode, you'll learn more about Multiple Sclerosis as we chat with Daana & Dawn about their diagnoses. The highs and the lows. Symptoms to medication to things they've found to help their conditions. In the next episode find out about how they began the Myelin and Melanin podcast together. ***Please note our giveaway is now closed***You can still claim your book on AmazonSearch ENabled Warrior Tracker. Check out the Girls' links:Myelinandmelanin@gmail.comIG/FB/Twitter @myelinmelaninYoutube: Myelinmelanin@youtube.com Join our tribe of ENabled warriors and fight back against your chronic illness!Facebook / ENabled Warriors  Insta: @ DISabledtoENabledFollow our founder Jessie Ace as she shares her journey with Multiple Sclerosis and starting a business on www.jessieace.com

MS News Today columnist and forums moderator Ed Tobias reports on a study of two people with COVID-19 who were also being treated with Lemtrada. Are you interested in learning more about Multiple Sclerosis? If so, please visit https://multiplesclerosisnewstoday.com/

Important Listening Nothing in this, or any other episode, constitutes medical advice, Also, a quick summary of the latest Covid advice for people with MS   Copyright: Bron Webster 2020

MS News Today columnist Ed Tobias marks the second anniversary of the completion of his Lemtrada treatments. Are you interested in learning more about Multiple Sclerosis? If so, please visit https://multiplesclerosisnewstoday.com/

We discuss the 7 pillars that make up the OMS (overcoming multiple sclerosis) program. Major benefits of eating healthily to help improve your overall health condition.  The science behind the diet. The overcoming MS book (available for free to the major countries) The benefits of meditation, living in the present, managing stress and reducing anxiety.  Overcoming MS encourages taking medication alongside a healthy diet, exercise, omega 3, vitamin D.  We talk about Geoff taking Lemtrada.  Differences in access to medicine around the world Exercise and chronic illness. Neuroplasticity in the brain. Does temperature affect your symptoms?  If heat affects you, try a WrapMeCool (www.WrapMeCool.com) an instant cooling that looks like a normal scarf. Use code EW19 to get 10% off Super quick secrets! Listen out for: Sleeping on a volcano. Sorry, what?!  And being chased by an orangutan. Standard.   Connect with Geoff Allix:Overcoming MS podcastInstagramTwitter  Sick of negative Facebook groups?Join the ENabled tribe:Search Facebook: ENabled Warriors Or Insta: EnabledWarriorsLearn to manage your stress now for free go to ENabledwarriors.org for our free Facebook messenger 5-day stress challenge. Click to open in Facebook messenger and click get started to begin. _________________________________________This episode is sponsored by Beekeepers Naturals. Since taking their bee propolis throat spray every day since the start of winter and I have remained cold-free! Check out the live video I did about it in the ENabled warriors group

MS News Today's columnist and forums moderator, Ed Tobias, discusses his experience being treated with Lemtrada. Are you interested in learning more about Multiple Sclerosis? If so, please visit https://multiplesclerosisnewstoday.com/

Susan Carey - My 21st birthday was at one of my infusions! Topics discussed in this episode:First experiencing double vision. Seeing two golf balls and two basketballs, the optometrist asked her to leave the room while her mum was told there was something in the back of her eye. she could have a tumor or multiple sclerosis.    Being officially diagnosed with Multiple Sclerosis - a degenerative health condition at 14A lumbar puncture done by a medical student. (A lumbar puncture is a common test done to diagnose Multiple Sclerosis. It involves extracting some Cerebral Spinal Fluid from between the discs in the spine and testing it) The people in Susan's Irish village sent her Rosary beads, jumpers and mass cards through the post, was this right to send to a 14 year old diagnosed with MS? She was convinced she was going to die! Treatments and Multiple Sclerosis. We discussed the MS drug Avonex and Susan's experience with the injectable drug. She was so terrified that her Father kindly stepped in to help her with it. After this she went onto Tysabri* (natalizumab) and then Lemtrada* (alemtuzumab) - both infusion treatments which means you need to stay in hospital or a few days. With Lemtrada you also need a few days of taking oral steroids before starting the infusion. Susan was told there was not a lot of research done around Lemtrada at the time. The nurse also didn't know what it meant for fertility something which Susan hadn't even thought about yet. She was told to go away and Google it, research everything about it that she could find and come to a decision on her own. Susan tells us about how she spent her 21st birthday in hospital doing an infusion and the doctors and nurses left balloons, cake and gave presents which made it far easier for her to deal with. Focussing on what you can do. Every day with her dad Susan would walk the length of the small pier in her hometown. She managed to do this after the Lemtrada treatment without holding on to anything. While she was in hospital, Susan decided she would not miss out on any of her diet or training programme so she packed herself some meals to have in the hospital and made a gym out of what she could find around the ward, like the stairs. Living through your teenage years without being able to do the things you absolutely lived for. Turning the hospital into a gym so she could keep up her fitness routine - even whilst being attached to an IV drip! Planning and prepping her own meals to take into hospital. There is no limitations around you, you can always work around things. Starting her own fitness coaching business after feeling unfulfilled in life called ‘fit fusion' an inclusive disability fitness program. When the people in your life are supposed to be supportive but just make you feel inferior when you can't do what they want you to do.  A shift.MS takeover made her realise what the hardest part of her illness - family and friends' unhelpful comments, suggestions and advice.  Best advice for coping with Multiple Sclerosis? Suan says to network online with people already talking about their experiences. *Tysabri is an intravenous infusion (drip) once every four weeks to reduce the number and severity of relapses. It reduces the number of relapses by about two thirds (70%), compared to taking placebo.Common side effects include dizziness, nausea, urticaria (a skin rash) and shivering.Treatment with Tysabri may increase the risk of progressive multifocal leukoencephalopathy (PML), an uncommon brain infection that can lead to severe disability or even death.(source: https://www.mstrust.org.uk/a-z/tysabri-natalizumab) *Lemtrada is a disease modifying drug (DMD) for active relapsing remitting MS and very active relapsing remitting MS.You take Lemtrada as an intravenous infusion (drip) in two treatment courses, twelve months apart. It reduces the number of relapses by about two thirds (70%), compared to taking placebo.Common side effects include infusion-related reactions w

New issues I've just discovered after Lemtrada infusion since June --- Support this podcast: https://anchor.fm/valerie75/support

My anxiety level is at an all time high..why? --- Support this podcast: https://anchor.fm/valerie75/support

My guest this week is Yvette Brisco. Yvette is an MS activist and an MS warrior. And when Yvette talks about the fight to find a cure, she means it literally! We're also talking about the European Medicine Agency's safety review of Lemtrada. We'll tell you about the 20 million American caregivers who are performing medical or nursing tasks for which they've received no training. We'll give you a real-world example of why people living with MS (or anyone else) living in a care facility need an advocate. And you'll hear about a web portal that uses language skills and artificial intelligence to predict cognitive decline. We have a lot to talk about. Are you ready for RealTalk MS??! RealTalk MS Will Be Podcasting From All The Major MS Conferences  :22 Download the free RealTalk MS app  1:30 The RealTalk MS Listener Community Set Another Record This Month  2:11 You Can Be My Special Guest on RealTalk MS Episode #100   2:51 The EMA Is Reviewing Lemtrada Safety Data  5:00 20 Million Family Caregivers Are Performing Medical or Nursing Tasks Without Training  7:33 One More Example of Why People Living With MS (And Everyone Else) In A Care Facility Needs an Advocate  9:34 Web Portal Uses Language Skills & AI To Predict Cognitive Decline  14:04 My Interview with MS Activist & MS Warrior Yvette Brisco  16:33 ___________ ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.comPhone: (310) 526-2283 ___________ LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Be My Guest on RealTalk MS Episode #100 Download the RealTalk MS App for iOS Download the RealTalk MS App for Android Use of Multiple Sclerosis Medicine Lemtrada Restricted While EMA Review is Ongoing Home Alone Revisited: Family Caregivers Providing Complex Care Talk2Me: Automated Linguistic Data Collection for Personal Assessment Give RealTalk MS a Rating & Review  ___________ Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 88 Hosted By: Jon Strum Guest: Yvette Brisco Tags: MS, MultipleSclerosis, MSResearch, EMA, Lemtrada, Caregiving, RealTalkMS

FDA warns about rare but serious risks of stroke and blood vessel wall tears with multiple sclerosis drug Lemtrada (alemtuzumab)

This is episode two of the podcast.    I am supposed to be starting a course of the disease modifying drug Lemtrada soon.   This is a chat recapping some bits of episode 1 and looking at what comes next.    I will be doing a video diary of my treatment, which you'll be able to find on YouTube. 

Artificial intelligence is about to change the entire healthcare landscape. And that might very well include how MS is diagnosed, treated, and managed. It's even beginning to impact the way some MS research is being conducted. My guest is the founder and CEO of iQuity, Dr. Chase Spurlock. iQuity is using its expertise in machine learning to improve patient care, drive the creation of new therapies, and reduce the costs associated with managing chronic illness, including multiple sclerosis.      We're also talking about the important but sometimes overlooked difference between MS facts and MS beliefs. We'll tell you about the safety alert that the FDA has issued for Lemtrada, and new survey research from the MS Society in the UK that shows the majority of people living with MS are living with feelings of loneliness and isolation.   You'll hear about new study data that shows the gender differences in MS have some age-related fine points that are worth noting, and we'll tell you about a Phase 3 clinical trial that's looking at the effectiveness of high-dose biotin in slowing or stopping MS progression for people living with progressive MS.   We have a lot to talk about! Are you ready for RealTalk MS?! ___________ The Difference Between MS Facts & MS Beliefs   0:22 How AI is About to Disrupt Healthcare 4:21 FDA Issues a Safety Alert for Lemtrada  7:40 MS Society in the UK Survey Research Shows 3 in 5 People Living with MS are Living with Loneliness  9:51 Gender Differences in MS Vary with Age & MS Subtype  13:40 MedDay Phase 3 Clinical Trial for Progressive MS Fully Enrolled  15:55 My Interview with iQuity CEO, Dr. Chase Spurlock  17:50  ___________ LINKSIf your podcast app doesn’t allow you to click on these links, you’ll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Download the RealTalk MS App for iOS Download the RealTalk MS App for Android FDA Warns About Rare But Serious Risks of Stroke & Blood Vessel Wall Tears with Multiple Sclerosis Drug Lemtrada Age-Dependent Variation of Female Preponderance Across Different Phenotypes of Multiple Sclerosis: A Retrospective Cross-Sectional Study iQuity   Give RealTalk MS a Rating & Review ___________ Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 68 Hosted By: Jon Strum Guest: Dr. Chase Spurlock Tags: MS, MultipleSclerosis, MS, RealTalkMS, mssocietyUK, AI, Lemtrada, MedDay, Biotin, iQuity

This week, we're talking about MS Activism with the former mayor of Sacramento, California and current MS Activist, Heather Fargo. In last week's podcast, we talked about the prescription drug price transparency bill that was recently signed into law in California. Heather played an important role in the passage of that law, and we'll be talking to her about why that law is so important to the MS community. We're also going to talk about why it's important to use your power as an MS Activist, and how you can become an MS Activist, if you aren't one already. The ECTRIMS-ACTRIMS joint conference starts tomorrow in Paris. It's the largest annual international MS research conference in the world, and the National MS Society and the International Progressive MS Alliance are hosting a webcast that you won't want to miss. We'll give you all the details and let you know how you can register for the webcast. We're also talking about a newly announced national MS Registry that you and your neurologist can participate in. And we'll look at a new Lemtrada study that produced some really encouraging results. We've got the news, views, interviews & breakthroughs that are important to you. So...are you ready for RealTalk MS?

[intro music]   Hello, and welcome to Episode Twenty-two of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m your host, Dan Keller.   This week’s podcast features an interview with Dr. Paul Matthews about the Optimize project in the United Kingdom. But to begin, here’s a brief summary of some of the latest developments on the MS Discovery Forum at msdiscovery.org.   Some good news came from the pharmaceutical company Genzyme. On November 14th at 9 pm Eastern time, the FDA approved the drug alemtuzumab – trade name Lemtrada – for relapsing forms of MS. The FDA previously rejected the drug in 2013 due to concerns about study design and side effects. There is still some concern over safety, though, so the company is releasing it to only a limited number of patients. The prescription will also come with a host of other drugs to protect against harmful side effects. Researchers aren’t quite sure how the drug works, but it appears to target monocytes, T cells, and B cells.   Researchers announced a new mouse model for fatigue at the 2014 Society for Neuroscience meeting in Washington, D.C. The model works by enhancing expression of the pro-inflammatory cytokine, interleukin-1-beta. The model caused mice to reduce physical activity, without showing other signs of illness such as fever or anhedonia. Middle-aged and aged female mice were most affected by the treatment, whereas young mice showed no difference in signs of fatigue. The model gives credence to the idea that fatigue is not produced from dysfunction in the arousal system, but rather is a result of inflammation. The researchers said that they hoped the model will help illuminate the neurobiology of fatigue, the most common and debilitating symptom of MS.   If you would like to keep up with all things MSDF, please consider subscribing to our weekly newsletter. We keep our newsletter up-to-date with all of our news stories, blogs, and items from our professional and research resource sections. We’re also on Twitter; follow us at msdforum. And on Facebook, you can like us at facebook.com/ms discovery forum.   [transition music]   Now to the interview. Professor Paul Matthews is at Imperial College London in brain sciences. Last week he talked with MSDF about imaging in MS. This week we’re discussing his involvement in a UK-based project intended to optimize and personalize MS treatment.   Interviewer – Dan Keller Welcome, Professor Matthews. You’re participating in the Optimize project in the UK. Can you tell me about that?   Interviewee – Paul Matthews Well, thanks, Dan. Optimize has been an exciting journey and we’re still at the early stages, but let me tell you a little bit about it. Over three years ago, a number of us got together to discuss what the barriers to development of stratified or personalized medicine for multiple sclerosis was. We all recognized what the potential could be if we could really figure out how to target medicines to responders, we would have a way of most appropriately staging the introduction of different medicines across patient populations, not exposing people who didn’t need them to drugs of higher risk and insuring that those who did need them got them early. This is a particular problem in the United Kingdom where there is a much more formal process for progressing from first-line DMTs to more powerful agents. And, in fact, there’s also – dare I say it – I mean, a frank therapeutic nihilism and a surprisingly small number of MS patients receive treatment because of the perceived lack of benefit to many of these first-line therapies.   Now how to change this. I think what we realized is that we need to have much more granular data on the characteristics of patients being treated and how they fared after their treatment over the long-term. The data provided within the usual clinical context is not only limited, but it ends up being rather patchy over time. In order to enable that, we needed tools that would both collect data and incentivize collection of complete data of high quality. Now a note about this. We all know how to do this within the context of clinical trials, but it’s hugely expensive; it’s expensive because there are multiple people always involved to crosscheck that the data is completely acquired in each paper, and secondarily, there are audit procedures in place in retrospect to insure that this is being done. This really isn’t feasible in routine clinical practice.   A colleague of mine, Rory Collins, who has specialized in setting up very large-scale clinical trials in areas like China and India, has shown how very simple electronic tools can help both insure that data is acquired completely and that there is an electronic audit trail to follow-up on data that isn’t. What they showed is that by creating simple electronic questionnaires that wouldn’t let the questionnaire be closed unless data of an appropriate type was entered in the field, and then automatically interrogating the data for quality from center to center and following up where there were potential lapses, one could begin to incentivize acquisition of the right data and actually make it flow faster.   So how could we make this happen within the MS space in the UK? Well, what we realized is that the toolkits were all there. The EU IMI program already has funded my colleague, Yike Guo, who’s head of the Imperial College Data Science Institute, to create a tool built around a platform called eTRIKS. This is a data management environment that allows links to apps or iPads or any other peripheral electronic tool for very powerful distributed data capture. We then, in gathering together a number of stakeholder meetings which involved people with MS, the MS societies, a number of industry representatives, and what I’m really pleased to say is leads from fully 18 of the major MS centers across the United Kingdom pretty much ringing the country, together created the vision of building such an electronic tool, distributing the types of input devices across the different centers, and beginning to create a database that could be held centrally or in a distributed fashion using all the new tricks of modern IT.   The first thing is acquiring the data, the second is doing useful with it. The second thing that’s rather neat about the eTRIKS platform is that we have shown how it can be built to allow different levels of access, so that there can be access by high-level users who get to see the whole dataset, but also by specialized users who might want to see only a part of it – like a doctor interrogating it for his or her patient – or, importantly, a person with MS interrogating it to see how the data that they have entered stands relative to that that’s entered across the country by all patients; it allows people with MS to begin to gauge how they’re doing relative to others with their disease.   Now, I think the latter point is worth building on, because I think all of us have been hugely impressed by the power of sites like Patients Like Me to engage people with the disease in the dialog about their disease and make them full participants in capturing data information. With this kind of distributed data platform where doctors and people with MS can enter data whenever and wherever they are to a central database which can organize it and allow it then to be interrogated as needed, means that we can begin to think about asking patients to enter data on the fly from home. Why is this important? Well, this actually completely transforms the way in which we understand the disease, it really gives us a much deeper sense of the patient experience. Rather than sampling a patient once every month or once every six months, we can actually capture how they’re doing through a day. And if we add to this some extra sensor technologies – say, for example, about movement – we can literally do this from moment to moment.   So the vision thus is that if we can use these modern IT tools to capture data from distributed sources – from doctors using iPads, from patients using apps, from sensors that people with MS wear – we can capture data in a central resource that can be distributed to those for the purposes that they need it in near real-time, and in turn provide a common environment for its analysis. I think it’s exciting. Now we’re at the early stages, the basic tools have been designed, we’re starting to build the sensor technology. And our genuine hope is with the completion of the first set of agreements with one of the companies who’s been the first to really take a plunge with us, we’re going to be able to create a beta form of the tool in 6-9 months.   Now before closing, I do want to add one thing. This is an exciting vision but the notion of building a database is hardly a new one and many people have had it. There is something that’s special about this vision and it’s the thing that I’m most proud of that’s come together from all of these stakeholders. It’s the vision of creating a database that will be an open database; open to all researchers once it’s built, not held privately by those who built it. And I think this is what could become a game-changer. Moreover, we see that the tools that we’re building in order to create this – the IT tools, the distributed apps, and so on – are tools that the community should own and should be able to improve on. So our intention is fully, as this program develops, to release a software for open-access use as well as the data. Our hope is that even if this doesn’t provide the solution of the future, it will begin to incentivize this kind of practice where we all share this important data to work together to find solutions to this disease.   MSDF Besides collecting MS-specific data, will it also look at general health and comorbidities to see how that affects outcomes?   Dr. Matthews No. That’s a really good question. Like so many doctors now, we’re very much focused on the progressive forms of the disease. Our belief is that comorbidities make major contributions to this, and that by influencing these comorbidities we may have the biggest short-term impact on our patients’ lives. So one of the advantages of a big data capture tool is that we can capture data on all of the other disorders that afflict people with MS, as well, and begin with, again, greater granularity because of contributions from people with as well as their doctors to look at this in ways that wonderful databases like NARCOMS haven’t been able to do. This is an important task for the future and one that we really want to grasp. We’re hoping with further funding to be able to link this to bioresources, as well, and the ability to access a patient’s fluid samples for Omics analyses certainly can add greatly to this.   MSDF Very good, I appreciate it.   Dr. Matthews You’re welcome, Dan, it’s been good speaking to you.   [transition music]   Thank you for listening to Episode Twenty-two of Multiple Sclerosis Discovery. This podcast was produced by the MS Discovery Forum, MSDF, the premier source of independent news and information on MS research. MSDF’s executive editor is Robert Finn. Msdiscovery.org is part of the non-profit Accelerated Cure Project for Multiple Sclerosis. Robert McBurney is our President and CEO, and Hollie Schmidt is vice president of scientific operations.   Msdiscovery.org aims to focus attention on what is known and not yet known about the causes of MS and related conditions, their pathological mechanisms, and potential ways to intervene. By communicating this information in a way that builds bridges among different disciplines, we hope to open new routes toward significant clinical advances.   We’re interested in your opinions. Please join the discussion on one of our online forums or send comments, criticisms, and suggestions to editor@msdiscovery.org.    [outro music]  

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