I ask the question because I feel if there was engagement between the medical community and the MS community, we might actually get somewhere in learning more about MS and treatment in particular.
Things have been happening in my world lately that are making me question what MS actually is, whether I have it and if the neurological community truly understand anything other than T-cells, white blood cells, things crossing the blood brain barrier or irrelevant data.
I'd love the opportunity to speak with someone who has both the knowledge of that stuff AND what having MS actually feels like.
I’m not sure if you have all heard of him but Dr Boster is an MS specialist in Ohio who has a YouTube channel. It was first made for his patients to learn between visits but now he just does it for everyone. SO MUCH INFO AND EDUCATION all in normal patient language. I love him! I’m considering paying just to fly there and see him lol. Here’s his link.
Ive seen a few of Dr Bosters videos, and concur he has a lot of good info. Became a subscriber to see more.
Totally concur! This is why I'm currently consulting with a DR group from Stanford - one of whom has MS herself - we're trying to create an interactive website that includes all sorts of holistic methods for getting at the root cause of autoimmune diseases and helps people manage symptoms through a variety of modalities, not just pharmaceuticals. I took a 10 week health class from this DR a couple years back that was SO helpful and ever since I've been gently pushing her toward getting her program out there so we can all benefit from it. Ideally we will be able to make her 1.5 hour initial intake appointment interactive online so people can figure out personalized ways to improve their symptoms. Everything will be free and accessible to all. There will be ways for people to interact with the network of doctors, and also there will be a support/coaching platform that helps people navigate the site and also with strategy implementation into their daily lives. One of the eventual goals is to also collect data from people around the country anonymously (if people select that it's ok) so that the doctor group can look for larger trends, especially when a geographic area is exposed to an extreme toxin event (like floods creating a huge increase in mold, etc.). These things unfortunately take time, especially when working with a group of busy doctors, but it will happen eventually! If anyone is interested in learning more or wants to learn more about what I learned in the 10 week course, I'm happy to share! XX
Although an interesting read, it kind of highlights the problem.
The site is for scientific types to show how clever they are to other scientific types, there's no forum for discussion or ability to contact anyone through the site.
I ask myself the question these days, who knows more, the neurologist who sees 30 patients a week for half an hour each, or the patient who has lived with MS 24 hours a day for 6 years.
I have improved my situation dramatically in the last fortnight with some simple measures, I worry neuros are too obsessed with the science than treating patients symptoms, a neuro with MS probably sees things differently which is why it would be useful.