MS Weekly News Review – June 20

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MS weekly news review

shutterstock_128020547Welcome to our very first weekly news review. Starting today, it is the intention to use the Monday column of this blog to cast a look back at the previous week’s editorial content of this MS site.

In particular, we’ll be looking at the wide range of topics covered and seeing which ones proved to be the most popular with everyone.

Two news stories, both about the use of stem cell therapy to treat MS, dominated the interests of people visiting Multiple Sclerosis News Today website last week.

Two facets of the same story, the outcome of a long term clinical trial in Canada, were presented in the two news items:

“Aggressive Stem Cell Therapy Stops MS Relapses, According to Long-term Clinical Trial” concentrated on the success of the long-term clinical trial of HSCT that followed the partipants for up to 13 years after treatment. The other, “Aggressive Stem Cell Transplant Approach Halts MS for Years, But Risks are High,” drew more attention to the risks involved in the procedure that remains confidential.

News review – one MS patient’s opinion

Others in the Top Five list of best-read stories were:

“Myelination Relies on Mechanical Stimuli Like That Used for Bone Repair, Study Finds”

This is about an interesting study that shows that stimulation of tissues can lead to myelination like pressure on broken bones can help them to repair. Now, I broke a few bones as a teenager but never has it occurred to me that pressure can help them mend. But, accepting that as a medical fact, it is exciting as a patient to find out that myelin regeneration can be stimulated in a similar way.

“‘Master Switch’ for Autoimmune Diseases Like MS Potentially Seen in DNA of Immune Cells“ 

So ‘super-enhancers’ in DNA have been found to include genetic variants that could be ‘master switches’ for autoimmune diseases. I have to admit to not being an expert in DNA. In fact, except for its use in crime detection my knowledge of the subject is next to nothing. However, it is a complex area of science and I am positive that this study is not the last we’ll hear about DNA.

“Genmab to Begin Phase 3 Trials of Ofatumumab to Treat Relapsing Multiple Sclerosis”

Latest news of the development of another drug to treat relapsing MS. I suppose this should be welcomed, if it is a genuine improvement on other disease modifying therapies (DMT). However, my feelings seem to agree with a significant body of opinion among fellow patients. We don’t want the big pharma companies coming up with yet another disease modifying therapy. There are enough already; what we want is for them to find a cure. But of course patients know there is more money to be made from DMTs than from fnding a cure.

In addition to the ones mentioned above, there were another 11 articles that made up the week’s total.

 

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Beatrice avatar

Beatrice

The DMT market is flooded all with drugs with about 30% efficacy all for just RRMS. The cure most likely is in stem cells but unfortunately right now you have to also be blasted with chemo. Does Big Pharm fund any stem cell studies alone? Are they giving any money to the Tisch Center study? I would hope that they would if for nothing else than to get their name attached to it but You don't kill the goose that laid the golden egg!

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Shasha avatar

Shasha

I am not sure Stem cells are the cure since you may destroy the brain/body again if the diet/life style etc don't change. It may take you back to the time you were born, but if nothing else changes to me the brain/body will be slowly destroyed like it did before due to the same factors.
I suppress my MS with the Celiac diet/supplements/LDN/detoxing/bioidentical hormones/Amour thyroid/Vit B12 methylcobalamin shot etc, but I need to do this daily which I don't mind since it keeps me thriving. Mitochondria may get hurt and need this kind of help and gluten may have attack the thyroid. How long will stem cell transplant help? 30 years? One year? I could not handle the Chemo. My gut lining is already hurt by gluten/GMO/antibiotics/Lyme etc. I don't want to lower my immune system, but keep it working right.

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Rob avatar

Rob

I read all of these things people are willing to do and/or put themselves through, and I wonder. I mean, you lost me at the very BEGINNING of what you claim you do to deal with your MS Sasha. And if ANY of us MS sufferers are plannin'on BIG PHARMA to discover a cure, then we may as well just go ahead and stop everything we're doing and accept a slow, disabling death. Because they're NOT. I thought my life was wonderful back in September 2012 after I turned 34, was making EXCEPTIONAL money, and had a son on the way. Then, I woke up blind, and I thought it would all disappear just like my vision had. I'll skip a lot of the details of the things that have happened since then and begin with now. Wait on it, I'm a STAY AT HOME "DAD", to my amazing 3 year old little boy and my 9 month old little boy! Yes, I'm a DAD, and I will say, I have loved and will CONTINUE LOVING IT! I have realized that my plans are IRRELEVANT to God's plan, and only his matters. I thought my life was ending when I was diagnosed, but it was just beginning. The Lord has blessed me beyond my wildest dreams, and continues to do so each and every day. I've gotten my first blessing each morning which open my eyes and I can see. I will say to all the guys out there, seriously, You REALLY DON'T KNOW! I've developed a WHOLE NEW RESPECT for women. They REALLY ARE smarter, stronger, and better than we are men. Cause this stay at home stuff ain't NUTHIN'LIKE we've always thought it was guys. Ladies,I've been a stay at home Dad since my 3 year old was born February 2013, so I speak from experience. I have just been on this ride since 2012, and it's been difficult. It still is, I can't lie, and it'll probably continue to be. Only now it'll be EASIER. I'm not in control anymore. I'm not the driver through this thing called life. I've taken a passengers seat. My Lord and Savior Jesus Christ is driving now, and I hafta say I'm a lot happier than I was before MS. So I guess I'm one of the few here who'll say I'll KEEP my MS! I'll keep it for as LONG as I need to. I ain't goin'back! Not a CHANCE of that! If a cure is the path God intends for me to travel, he'll take me there. I DEFINITELY ain't gonna get my hopes up over every Tom, Dick, and Harry story about this or that showing this or that. When a CURE is found, if you've got MS, you can bet you'll hear about it. Probably from the insurance companies first, because none of them wanna pay what mine does every month for Tysabri. Try the Lord everyone. I can honestly say that once you've given your heart to him, you will find riches you've never imagined were possible.

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Inge Freeth avatar

Inge Freeth

Dear Rob, Sacha and Beatrice,
You are all brave to leave a comment in your own personal way. AND we all want a cure for sure, no one wants to stay with MS, not even Rob.(you want to see your sons grown up, don't you?)keep posting and making MS aware for a lot of people don't know what MS is , (they still think its a problem with muscles)the future is ours, greetings Inge.

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Rob avatar

Rob

Your exactly 100% correct Inge! About EVERYTHING you said! However, I do wonder what you could mean by me "Wantin'to see my boys grow up"? Well of course I do, but I'm not sure why I can't see them grow up because I have MS? My Mom used to tell me sumthin'a long time ago. She'd say "I brought you into this world boy, and I can take you out"! HAHAHAHA! The same applies to God, because he can definitely do it! I don't go lookin'for reasons to leave early or anything, but when the Lord is ready to bring me home, I DEFINITELY ain't scared! Do I WANT TO HAVE MS? Why goodness no! I want a cure too! Only thing is I've made my peace with having MS. It sux. It's really hard every single day. I hurt all the time. I hafta go once a month to have an infusion. And even I know I'm not the same person I used to be (I'm Cognitively Handicapped, like SERIOUSLY). I'm not the man who my wife married either. I worry that my boys could get MS. I worry that my craziness is gonna rub off on them. Me getting MS was never anything we planned or wanted to be a part of our lives, but it is. My whole thing has been to accept it. I basically know how it has affected me, how it could affect me, and I definitely know that it can affect me. I choose not to dwell on it. I know I have it and so does everyone else. God gave us all brain to use. If you point a gun at your head and pull the trigger, your gonna die, and God would probably call somebody an idiot if we didn't know that. I have infusions every month, and actually sittin'here havin'my 41st infusion now. God gave us the knowledge to make medicines to help us. I believe the medicine helps me, but it's not why I've been relapse free for almost 4 years. I have stayed well because of my Lord Jesus Christ. I talk with him all day every day. If my feet start tingling, I bring it to him. If I can't figure out a problem, I bring it to him. I also thank him for everything I have. Getting MS has really put things into perspective for me. I can go forward constantly thinking about it, constantly worrying about it, and thinking POOR ME. Or, I can do exactly what I do now. I don't think about it. Yes, I'm sure that the aches and pains I experience every day are MS related. I never think oh no, my arm's hurt because I have MS. If they hurt, oh well. I've gotta push on. I know I could wake up tomorrow and not be able to walk, but that doesn't mean I'm gonna go throughout each day and night worried about it. If it happens, I guess I'll hafta deal with it just like everything else I've had to deal with. I'm still alive, I'm still breathing, and when the day comes that I'm not, I know I'll be in heaven, and that's fine with me! All we know us this world, because we were born here. I have no doubt that when I get up there, I'm probably gonna be asking why he made me stay down here so long! HAHAHAHA! So no, I don't want MS, but I've got it, so I may as well accept it, keep moving forward, and not worry about it. I do not think however that if they don't find a cure won't be able to watch my boys grow up. I may hafta watch them both wipe my butt because I'm not able to anymore, but it's not like I haven't wiped theirs! HAHAHAHA!! We've got MS everyone, let's ROLL WITH IT! Keep a good attitude! Keep a positive outlook on life! None of us will be here forever! We've all gotta die of sumthin'and we don't know when, how, or why it's gonna happen. All of our times here are limited, even if a cure was found. I'm not gonna spend the time I have crying about having MS. I'm gonna live my life to the fullest, whether I'm walking and talking fine or not. Sure, life was great before MS, making over 100K per year, traveling, and all, but I wasn't living my life the way I should've been. So, MS came and took it all away, boo hoo. So freaking what! The Lord has made me the richest man in the world, or at least that's how I feel. So yes, I really do think that me getting MS was a blessing. I got right with the Lord again, I have 2 beautiful little boys, I've got the greatest wife ever, I have a roof over my head, and food in my belly. What more could I ask for? Clearly y'all can tell if I'm able to I'll talk NON-STOP forever! HAHAHAHA! My prayers go out to all my fellow MS'ers always. Until we get a cure, we've all gotta keep on keeping on, si let's do it!

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