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Tuesday, August 8, 2017

Multiple sclerosis: New blood test can identify types of MS and if treatments are working

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Updated 3 Feb 2017, 10:05pm

Patients with multiple sclerosis will soon have access to a new test which can tell them exactly what type of MS they have and how well their medications are working.
At the moment, patients have to have an array of expensive tests to determine what kind of MS they have.
The study, published in Nature scientific reports, shows a blood test could greatly simplify and speed up this process, allowing doctors to adapt a patient's treatment more accurately and rapidly.
Neuroscience Professor Gilles Guillemin from Macquarie University said the discovery was the culmination of 12 years' hard work in the lab.
Neuroscientist Gilles Guillemin
"We can tell you which sub-type of MS you have and if you respond to treatment," he said.
At the moment, patients have to wait weeks on a medication to see if it is effective.
"If you can have the blood test and see the marker not working, and this treatment doesn't work, the clinician will be able to realise very quickly change to another therapy," Professor Guillemin said.

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Ohio State researchers report breakthrough in cell regeneration

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Technology has potential for use in repairing organs, blood vessels and nerve cells
Published on August 07, 2017

Researcher Chandan Sen with the nanotechnology-based chip designed to deliver biological
Researcher Chandan Sen with the nanotechnology-based chip designed to deliver biological "cargo" for cell conversion. Image: The Ohio State University Wexner Medical Center

*** Video and photos available for download: ***
COLUMBUS, Ohio – Researchers at The Ohio State University Wexner Medical Center and Ohio State’s College of Engineering have developed a new technology, Tissue Nanotransfection (TNT), that can generate any cell type of interest for treatment within the patient’s own body. This technology may be used to repair injured tissue or restore function of aging tissue, including organs, blood vessels and nerve cells.
Results of the regenerative medicine study published today in the journal Nature Nanotechnology.
“By using our novel nanochip technology, injured or compromised organs can be replaced. We have shown that skin is a fertile land where we can grow the elements of any organ that is declining,” said Dr. Chandan Sen, director of Ohio State’s Center for Regenerative Medicine & Cell Based Therapies, who co-led the study with L. James Lee, professor of chemical and biomolecular engineering with Ohio State’s College of Engineering in collaboration with Ohio State’s Nanoscale Science and Engineering Center.
Researchers studied mice and pigs in these experiments. In the study, researchers were able to reprogram skin cells to become vascular cells in badly injured legs that lacked blood flow. Within one week, active blood vessels appeared in the injured leg, and by the second week, the leg was saved. In lab tests, this technology was also shown to reprogram skin cells in the live body into nerve cells that were injected into brain-injured mice to help them recover from stroke.
“This is difficult to imagine, but it is achievable, successfully working about 98 percent of the time. With this technology, we can convert skin cells into elements of any organ with just one touch. This process only takes less than a second and is non-invasive, and then you're off. The chip does not stay with you, and the reprogramming of the cell starts. Our technology keeps the cells in the body under immune surveillance, so immune suppression is not necessary,” said Sen, who also is executive director of Ohio State’s Comprehensive Wound Center.
TNT technology has two major components: First is a nanotechnology-based chip designed to deliver cargo to adult cells in the live body. Second is the design of specific biological cargo for cell conversion. This cargo, when delivered using the chip, converts an adult cell from one type to another, said first author Daniel Gallego-Perez, an assistant professor of biomedical engineering and general surgery who also was a postdoctoral researcher in both Sen’s and Lee’s laboratories.
TNT doesn’t require any laboratory-based procedures and may be implemented at the point of care. The procedure is also non-invasive. The cargo is delivered by zapping the device with a small electrical charge that’s barely felt by the patient.

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Monday, August 7, 2017

MS Wellness Workshop - Monthly meetings in Miami, FL

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Stop Comparing - Do what you Can Do!

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The other day I was out cranking it on the bike trail. It wasn’t an epic ride—the 20 mile mark still manages to elude me—but I put in a solid 13 miles over a couple of hours, decently impressive on an arm trike in 90-degree heat. And then I ran into Beth. You know, that Beth.

“Dave!” It was Beth Ulibarri, aka @MilesAndTrials, aka Ironman Beth. She also happens to be a fellow active MSer, only with a bit more emphasis on the “active” part. We all know of Beths, those absolute studs in the MS world that defy the disease with an athletic prowess that impresses even the pros (she has trained with our resident pro triathlete Kelly Williamson).

I asked how her ride had been and if she had logged a few miles that morning. “A few.” Like 90 in just under 5 hours. She was training on her Felt B12 TT carbon fiber bike (while decked out in her sponsored Klean kit) for the upcoming Ironman Lake Placid, a 2.4 mile swim, 112 mile bike and 26.2 mile run. (Update: She finished her fourth Ironman in 12:09 and set a new PR! Daaamn.)

Now, I could have looked down at my Craig’s List clunky trike with seven gears and felt jealousy. Or moped because on the best of days, I was putting in a fraction of the miles Beth logs JUST TO GET WARMED UP. But that’s a fool’s errand when you have an unpredictable disease like multiple sclerosis, one that affects each person wildly differently.  

It’s so tempting to compare yourself with others—the healthy, the diseased, even the “old you.” Don’t dare fall into this trap. Don’t compare yourself to Beth or, for that matter, to me. Do what you can do. Today. And the next time out, if your goal is to improve, strive to do it better. If it is to maintain, then attempt to match it. If it is to just try to do something healthy, then try. With all due respect to Yoda, it’s okay to just try.

Still bummed? Then remind yourself about Facebook. You know, when you see the posts of friends who are eating THE BEST MEAL EVER or doing THE COOLEST THING EVER. Sounds like they are having more fun than you, awwwe, sad face. But remember, those same friends are not going to post about the ungodly amount of diarrhea they got after that 5-star meal or that they permanently lost 10 percent of their hearing because they were too close to the stage when they got that high-five from Ke$ha (oh wait, she goes by just Kesha now). They probably also got food poisoning after eating a hot dog at the concert, had an unfortunate “accident” in the car on the drive home, and then were so distracted that they got into a fender-bender. (Imagine exchanging insurance information after that.)

See what I’m saying? Stop with the measuring sticks. 
Be inspired by others with this disease and then do what you can do. Today. 
And then tomorrow? Do what you can do.

Written by Dave Bexfield: 

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Sunday, August 6, 2017

Communication Challenges & MS: Develop Skills for Better Communication

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by Mary Pettigrew | Jul 25, 2017

Communication is key when interacting in society and with the people involved in various facets of our lives.  When conversing with family (spouses, children, parents, etc.), doctors, employers, friends, etc., it’s important all parties involved make an effort to give and receive information which will result in a clear understanding of one another.  This can be a particularly challenging matter for those living with MS.  Cognition, speech, meds, emotions, etc. can compromise communication.  What we say, how we say it, and how our messages are received can make or break the outcome of a conversation.  

There is nothing more frustrating than trying to convey a message, yet the other person either doesn’t “hear” or misconstrues your words and intent – all efforts become lost in translation.  If problems with communication are ongoing and become chronic, the damage to our self-esteem and emotional well-being can compromise our lives and relationships as a whole.  There are ways to avoid such issues via various techniques and tools to help you develop better communication skills.  With practice, you can improve the chances of engaging in dialog with successful, healthy results.

There are two key components vital for successful communication:  SPEAKING and LISTENING.  Listed below are a few pointers from MS and Your Feelings by Allison Shadday, LCSW

Tips to improve SPEAKING skills:   

  • Allow proper TIME available for conversation; don’t rush.
  • Check your emotions – avoid touchy topics if emotions are fragile
  • Stay on track – prepare ahead & write down notes of importance
  • Avoid accusatory words & statements – “always” or “never”
  • Use your words to explain & express FEELINGS – don’t assume
  • Eye contact – use it often
  • Remove distractions to increase attention & focus – TV, pets, etc.
  • Choose a comfortable setting to encourage relaxed conversation
  • Avoid insults – be respectful & open minded
  • Check in to confirm listener UNDERSTANDS; offer to clarify if not
CONTINUE reading this important information

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A Patient's question about diets

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An MS patient's Question via email to Cherie Binns, RN BS MSCN:  
I attended the seminar at the Melville Marriott on Long Island on 7/22/17. I was very interested in what you had to say. Can you tell me how you changed your diet? Did you take any supplements?  I know you exercised in the pool. I am going to try that. Please let me know how you changed diet, what you excluded. I'd love to hear from you by e mail or phone. I look forward to hearing from you. Thank you so much

It’s the Little Changes that Matter

Diet is very different for each of us, just as our MS is different.  I will certainly tell you what I have done and the impact I feel those changes have had but you need to take the time for yourself to find out what is right for you.   I would start with simple modifications and not radically overhaul your diet as you are more likely to make it a lifestyle change and stick with it if you work that way.  My advice is to avoid fads like the Wahl's Diet and Paleo Diet and do this in a way that does not negatively impact family meal time or the budget.

I have a couple of siblings and a daughter who are lactose intolerant so I started there and eliminated dairy food.   It takes a couple of weeks once you eliminate something altogether to see if there is any change (negative or positive) so do this one food group or item at a time.  You are far less likely to crave and binge on a "forbidden food".  Because steroids over the years had created osteoporosis and I was breaking bones left and right in my early 50s, my Primary Care Physician (PCP) suggested that I add non-fat plain yogurt to my morning fruit because of the high calcium content.  That did not seem to bother at all and I still do that daily.  I can eat hard cheeses because most do not contain lactose while soft cheeses do.  Those changes actually improved fatigue and hip pain for me.

Then I began to read labels and stopped buying prepared entrees and vegetables which contain preservatives, salt, sugars, dyes and other additives.  Again, fatigue seemed to be the first of the MS symptoms to be helped by that.  Glutens came next.  I stopped with the breads and pastas and what I had known, since my teens, to be an "irritable gut" calmed right down.  Pain all but disappeared and my sleep improved and energy increased.  Those changes have been in the works now for about 8 years.   When I am traveling, I cannot always eat as I would at home and I notice that (especially with breads, pastas, added salt, etc) I do not feel as well and my energy is sapped and there is more joint pain and patches of neuropathy that have been quiet will reactivate.

I have this style of eating down and it is second nature to prepare a meal in less than a half hour from scratch.   My husband admits to more energy and better sleep since he adapted to what I was eating as well.

As far as supplements, all of them were recommended by my Dr.   I take calcium with D because I am an older postmenopausal woman with thinning bones.  I take additional Vitamin D and the levels are checked every 3 months and dose adjusted as necessary.   I take Fish Oil because my triglycerides were high and my Dr. wanted to see if that helped before putting me on a Statin that had a pile of side effects.  And when I was on an interferon and my liver enzymes were elevated, I was on Milk Thistle to bring those levels back in line and allow me to stay on my meds.

My exercise routine consists of about 30 minutes a day in a cool water jacuzzi (no jets) stretching and strengthening using resistance tubing.  My endurance is far better now than it was before I started this and I can now walk a half mile or mile on a cool evening with my husband where I could not do a half block before starting this.

You don't need to deny yourself.   Make small changes till they become habit and second thought then add more small changes.  What I do is no longer diet or exercise, it is just being more aware of what goes into my mouth and what I do with my body and I believe I am healthier, more productive, less impacted by my MS as a result.

By Cherie C. Binns RN BS MSCN

July 31, 2018

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