Very very interesting, mshope.org

[RoyceNewton]

mshope.org, somebody posted this yesterday and I would like to thank you, so thank you.

With the ongoing quest for more and new information about my illness, I went to the site. I watched the video and was rather sad about what he said. After being sad for five minutes. I watched Mr Embrys video and had a thnk. Thinking is actually a good thing, reminds me that I still have something working upstairs. She who must be obeyed says not much, but I guess it is still something.

He speaks of diet and exercises mostly. I am not sure I can or will follow everything he says. it might be a little too late. It has been twenty years, but if "YOU are a newbie, or even a few years along your ms journey it might be a good thing to add some of his suggestions. Especially if "YOU" are having issues with insurance etcetera. I do totally agree with his diet recommendations, I followed the Swank Diet protocol for many years, I still do, just maybe not as strictly. Exercise, well that is three or four days a week, I should do more but I am beholden to somebody else's driving schedule, for gym and what other exercises, I do at home. I do not do my chin ups, leg raises all in one go. Just all through the day, that gets me between 60 and 100 leg raises a day, 18ish at a time. I try to keep my core strong so that I can always hold myself up straight and get out of bed. I feel this is probably more important than big sexy muscles, besides she does not like me to be tomuscle-bound.

He also mentioned a Judy Graham, diet book and a Dr Wahls diet book. Amazon will have them, I have not looked them up but I am sure that they are not too expensive.

He also talked about ms societies around the world, I am not disparaging anybody, too much at least, but I was told not to mention protective underwear to the newly diagnosed (newbies) because it might scare them. Far better that they embarrass themselves needlessly than to say such things. Twenty years ago I was told not to mention emotional issues because it was really not that big a deal. Good thing that I had an emotional support system that was there for me. Otherwise, we may not be having this talk today.

I am not ever suggesting to "YOU", that "YOU" should not take your Disease Modifying Therapy(DMT). I took Betaseron\Betaferon and take Tecfidera now, Merely that it will not hurt "YOU" to add some healthy eating principles to your lifestyle. Some exercise is great as well, getting the endorphins flowing and feel better within yourself.

This is a multi-factorial condition. It is not stopped by doing just one thing. Look for multiple ways that "YOU" can use to help "YOU" manage the many years of this, your ms life.

Am I making a point for "YOU"? This is a big condition that we have. There are many different approaches that "YOU" can take. I am not in your head, or with "YOU" constantly. I am just talking to "YOU" for a few minutes every day or so, and what I am saying is "DO NOT" despair. There are ways to manage this illness, find your way and manage your ms life. Relapsing-Remitting ms is a very doable disease no matter what "YOU" are told. Make a choice to "DO" it and get started, because "YOU" really "CAN" I believe in "YOU"

Royce

ms is not impossible, you just have to make some changes and decisions.

[Frances_B]

This mshope.org site is just a "front cover" leading to Direct-MS.org - which is a website set up many years ago by Matt Embry's father when he developed his "Best Bet" diet for MS. I'd be pretty cautious because Matt Embry is promoting that there is some substance to the CCSVI theories promulgated by Dr Zamboni - including a UNDATED video clip where he talks to Zamboni. Of course Zamboni is reluctant to let go of his vascular theories relating to MS and comes up with a whole heap of "explanations" as to why it should still be considered valid theory - "it's all due to lack of training and bad mathematical equations". Also of note is that Matt Embry states that he underwent the "venoplasty procedure" and that according to Zamboni his veins are still clear from that procedure.

In his video clip Matt Embry implies that calling such theories "junk science" is almost part of a conspiracy on the part of MS Societies because the societies want to keep promoting drugs produced by Big Pharma. Thus a further implication is that anyone who does not agree with CCSVI theory is helping to perpetuate a conspiracy. I'm not a huge fan of Big Pharma and their quests to line the pockets of shareholders, but it's drawing a bit of a long bow to imply that they are in cahoots with the MS Societies to the extent of stifling research into MS which is not drug based. Puleeease........

It's funny how many people who have paid large amounts of money for procedures such as CCSVI (even if they didn't get any noticeable or measurable benefits from them) will still support the theories behind them. It's as if they can't face the thought that they were conned. And this is even after the "guru" who came up with the ideas has finally admitted in a publicly available academic article that it does't work.

jamanetwork.com/journals/ja...

In January 2018 Zamboni finally admitted that "treating" CCSVI with "venoplasty" is of no benefit in MS. They ran a clinical trial where patients underwent either a real "venoplasty" or a fake one. In a nutshell, the published conclusion was that "Venous PTA has proven to be a safe but largely ineffective technique; the treatment cannot be recommended in patients with MS". You can read the full article for yourself on this link - including all the statements about how there was no diffidence in relapse rates, lesions numbers etc between those who had a real "venoplasty" and those who had the fake one.

[RoyceNewton in reply to Frances_B]

Another good reason why a mser should do their research thoroughly. I like the diet info, but as I have said this looks to be sensible healthy eating. The exercise, I exercise just would never perspire like he does, but if he can handle it good for him. ms Societies I honestly do not have a lot of faith in, but when their goal is a cure not helping emotionally or mentally there is an obvious difference in my needs to their goals.

Always just be aware of risks, cost efficacy options whenever somebody tells you something. I have had twenty years along this ms path and I guarantee that I still make mistakes. Part of being human and chronically disabled.

Royce

[sashaming1]

A Whole 30 diet (similar to a Paleo diet) is supposed to reduce/prevent internal inflammation, which can help/eliminate MS. I do it but I can't prove if it works or not. Hmmmmm.

[RoyceNewton in reply to sashaming1]

Beats doing nothing.