Diagnosed a little over 2 years ago with ppms and am totally going to kick it in the butt. I love eating right and working out every day. I will never stop and i also have the best wife and children living through it with me. We are all so mentally strong. That really helps ❤
I was formally diagnosed in 2021 with MS. Since then, and in years prior for a different medical condition. I have found that here in Australia, medical professionals are far to timid in delivering any information regarding a patients medical diagnosis and conditions. I have found out through inquiry and research that many medical professionals are very scared of being sued for malpractice and only provide the absolute bare minimum of care and information to the patient. They have a large body of insurance companies behind their profession. And are exempt form criminal charges due to legislation put in place to protect them. For actions that would have a non medical professional incarcerated for.
Thanks, I stopped the video at 4:29 to leave an opinion comment: No, I disagree. As a former branch services coordinator for National MS, I was on the helpline, ran program events back in 97-98. I felt bad for the patients. I myself was diagnosed in 2016. Yikes is right. *.. Importantly: From experience, the injections only slow the decline. The new meds only mitigate the duration between relapse or flare-up. And so, 'Everything I am seeing, watching, and learning about since my 2nd flare-up, tells me HSCT Therapy is what I want to do to get back to my life. I have every intention to seek out, either GIO-STAR, or Dr. Rivera in Puebla, MX. for treatment or options. I don't have a Decade to sit and wait until the U.S. stops acting now like a 2nd World Country; just ask Selma Blair.. Thank you. 😊
I have RRMS. The issue is that each relapse doesn't not return me to where I was. I slide 1-2% with each relapse cycle. My last relapse was 2007 but I have little issues in between. Totally f***ed illness to have. No snacks or free t-shirt is included. 😢
Yip, I was diagnosed in 2004. Back then I was told the stats for survival of HSCT was not good & I had a wife with two small kids (5 & 1 year olds). Seemed like a bad option to die for them at that moment (plus we’d have to pay for it!) Eventually had it in 2017 when options started to look very grim & stats had improved*. I wish I had done it earlier as it stopped the disease in its tracks. (*From a paper I read, the reason the HSCT results were poor was because neurologists were conducting the experimental HSCT treatments! Not the experts…)
When I was in the diagnosis process last year, I felt like clinicians were trying to tell me not to worry - instead of explaining the possibility space, they tried to focus on the positive, thinking that this would reduce anxiety. But as a neurodivergent person, this is not appropriate for how I experience anxiety. I need to understand things from the bottom-up, not just follow top-down guidance.
Thank you so much for sharing this. Hopefully people will read this and, if they're in a similar situation to you, can talk to their doctors and get the explanations they require. Have you been able to find the support and advice you need now?
Is this a treatment you've used? How did it go? Thank you so much for sharing your opinion. It's really helpful to hear from all areas of the MS community.
Diagnosed a little over 2 years ago with ppms and am totally going to kick it in the butt. I love eating right and working out every day. I will never stop and i also have the best wife and children living through it with me. We are all so mentally strong. That really helps ❤
I was formally diagnosed in 2021 with MS. Since then, and in years prior for a different medical condition. I have found that here in Australia, medical professionals are far to timid in delivering any information regarding a patients medical diagnosis and conditions. I have found out through inquiry and research that many medical professionals are very scared of being sued for malpractice and only provide the absolute bare minimum of care and information to the patient. They have a large body of insurance companies behind their profession. And are exempt form criminal charges due to legislation put in place to protect them. For actions that would have a non medical professional incarcerated for.
Thanks, I stopped the video at 4:29 to leave an opinion comment: No, I disagree. As a former branch services coordinator for National MS, I was on the helpline, ran program events back in 97-98. I felt bad for the patients. I myself was diagnosed in 2016. Yikes is right.
*.. Importantly: From experience, the injections only slow the decline. The new meds only mitigate the duration between relapse or flare-up. And so, 'Everything I am seeing, watching, and learning about since my 2nd flare-up, tells me HSCT Therapy is what I want to do to get back to my life. I have every intention to seek out, either GIO-STAR, or Dr. Rivera in Puebla, MX. for treatment or options. I don't have a Decade to sit and wait until the U.S. stops acting now like a 2nd World Country; just ask Selma Blair.. Thank you. 😊
I have RRMS. The issue is that each relapse doesn't not return me to where I was. I slide 1-2% with each relapse cycle. My last relapse was 2007 but I have little issues in between. Totally f***ed illness to have. No snacks or free t-shirt is included. 😢
Yip, I was diagnosed in 2004. Back then I was told the stats for survival of HSCT was not good & I had a wife with two small kids (5 & 1 year olds). Seemed like a bad option to die for them at that moment (plus we’d have to pay for it!)
Eventually had it in 2017 when options started to look very grim & stats had improved*.
I wish I had done it earlier as it stopped the disease in its tracks.
(*From a paper I read, the reason the HSCT results were poor was because neurologists were conducting the experimental HSCT treatments! Not the experts…)
When I was in the diagnosis process last year, I felt like clinicians were trying to tell me not to worry - instead of explaining the possibility space, they tried to focus on the positive, thinking that this would reduce anxiety. But as a neurodivergent person, this is not appropriate for how I experience anxiety. I need to understand things from the bottom-up, not just follow top-down guidance.
Thank you so much for sharing this. Hopefully people will read this and, if they're in a similar situation to you, can talk to their doctors and get the explanations they require. Have you been able to find the support and advice you need now?
@@LivedHealthMSyes, largely thanks to communicators like yourself!
Agreed she works with Giovanoni and his Mouse Dr. and they always ten years
behind the curve. Prof G spent ten years fighting hsct as too risky.
HSCT at dx is the best option.
Is this a treatment you've used? How did it go? Thank you so much for sharing your opinion. It's really helpful to hear from all areas of the MS community.
see "normal brain atrophy after hsct for ms"
see "tysabri brain atrophy ms news today"
this is why people smolder on DMT but not on hsct...