Category Archives: News / Research

Multiple Sclerosis Q & A

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Sometimes I get some very heart-warming or heart-rendering comments, especially on my About and MS Diagnosis pages at the top of this site.  I think many of people’s multiple sclerosis questions are universal and so most can relate to what is being asked.  And comments often echo what is on a majority of patients’ minds.  Here are a few recent comments and questions I’ve received. I put forth my responses, humbled that anyone would care to know them. I’m constantly in awe of others’ situations and moments of enlightenment; thanks for letting me be a part of your MS journey, and you mine:

Terri Says:

Hi there, this is probably going to sound very strange but i just dont know what to do, i feel very alone and frightened to see my doctor to ask for help. i have so many symtoms and sometimes end up telling myself its just in my head and feel like im going crazy. im only 24 but at a lose end i have blurred vision dizzy spells, extreme muscle pain and can sometimes lay awake at night with muscles tightning cramping and twitching. i’ve had a few times where a certain part of my body just tightens to the point im unable to move it for days without it seriously hurting along side all my other symtoms, but after a few days it just disapears and i feel fine again and even more confused then before! have you any advise for me as i just feel as though if i walk into my docs and say i think i have ms that i will be laughed at.

Jen Says:

Hi Terri—

I don’t think this sounds strange at all. It actually sounds like SOMETHING, but the question is “what?” Since I’m not a doctor, I would suggest that you visit your primary care physician for a work-up. That’s how many MS patients start the journey towards diagnosis. If you find your primary doctor to be unhelpful, unknowledgeable, or unwilling to refer you to a specialist, then you might want to seek out a neurologist (an MS specialist) on your own. This type of doctor is the one who can diagnose multiple sclerosis (or rule it out.) I also suggest that you continue to pursue this until you get a satisfactory, definite answer. You may change doctors a few times, but make sure that your eventual doctor takes you seriously.

And please know that there are many of us MSers and others with conditions that are here to support you, whether you have MS or not. If you seek out a local MS organization near you, you may also find contacts for good doctors and/or support networks.

I’m hoping the best for you: feel free to email me or comment again. I’d love to hear how things work out. womenzhealth@yahoo.com

Dear Jen,

A friend i met a while ago revealed to me that he has multiple sclerosis.
I never new there was such a thing.
Except maybe once, but im not sure, i watched a movie with a lady ( a know actress) that had to sit on wheal chair in the end and couldn’t move. I’m not sure if that movie was discussing MS.
Can you please explain to me more about it. Can you just give me a brief description of how he (a person dealing with MS) goes through his day. What kind of activities i can do with him that would make him feel good and keep his morals high and make him smile.
He seems to be active and even sexually active how could that be?
Does this condition keep on getting worse or can someone cure from it?
I thank you very much for your time
Love,
B

Hi B–

Lots of things….

First, everyone is different with MS. Some have relapsing/remitting disease that comes and goes, and it can cause continual damage when it strikes. Do you know if your friend has relapsing/remitting MS or progressive MS? The progressive type often takes over after years of relapsing/remitting. It is a worse kind because it keeps progressing with no remissions.

Men often have worse MS cases than women, although less men develop it. But it sounds like your friend is still mobile. Does he use any canes, crutches, a scooter, or a wheelchair? Sometimes people with MS don’t need these devices all of the time, just during attacks. It depends on the person.

People react differently to MS, depending on how severe they have it. Some are hardly affected, whereas others are severely challenged (such as the woman you saw in the movie. I’m thinking it might have been Annette Funicello, who has a very progressive form of it.) The vast majority of patients have a moderate case, where they are affected but not severely enough to be in a wheelchair. I hope this is the case with your friend. Does he work? How old is he? I myself am home on disability, but I don’t use assistive devices on good days. I do get very tired from the MS, which is a common symptom.

What you can do for your friend is ask him what would help or cheer him. Does he need help with any chores? Does he just want you to visit and spend time with him? MS can be very isolating if a patient is stuck at home. Would he like to join a support group that you could take him to? I find when people ask me what I want/need then I can be specific and not have them always guessing and wishing they knew what to do. And sometimes just being there for support is fantastic.

About the sexual activity: this is a tricky area, because many patients have problems in this realm. Due to numbness in the genital region. Not all patients have this, but sometimes males can have problems getting erections because they lack feeling in this area. It depends on the patient. Others can be mildly affected and still maintain active sex lives.

Basically MS is a disease of the central nervous system (brain and spinal cord) where the body attacks itself (autoimmune) and damages nerve coverings. This causes all sorts of symptoms like numbness, pins-and-needles, loss of function in body parts, pain, vision problems, and so on. Some of this damage can be temporary and sometimes it ends up being permanent. We currently have several medications that HELP the MS, but there is no CURE at this time. But there is a lot of research going on and the chance of a cure in the future is good.

I hope this has helped a bit. Here are some websites that may also help you and your friend. Feel free to pass my website along to your friend as well. I like to provide MS news, support, and my own MS story:

www.multiplesclerosiscentral.com
www.nmss.org (the National MS Society in the U.S.)
www.msfocus.org

Maris Says:

Thanks for the Jethro Tull interlude (music video.)  Happy holiday season!

Maris in Israel

Jen Says:

You too!

Mike Says:

My fear is that I might be fooling myself that I can handle the MS…am I kidding myself? My father- in- law had MS for 35 years and it was horrible on the family, so I can see the possibilities for me.

Jen Says:

I don’t think you’re fooling yourself. I think you are a different patient than your father-in-law and you just have to see where your path takes you. Yes, you may have a similar path as him, but it’s not a given. Thankfully MS is very individual and no two cases are exactly alike. This makes it difficult to know what will happen to you, but— JOYFULLY— you will not know what will happen and you can create your own life and live it the best that you can.

Thanks for reading, Mike, and I hope for your courage and individuality to take your life by the bullocks and LIVE.


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New Non-Profit MS Anthology

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I’m looking forward to getting a copy of this new multiple sclerosis book I’ve recently discovered. Two of my favorite online writers, Diane and Joan, have been included in an MS anthology that gives patients’ stories about the trials and victories of living with multiple sclerosis. The book is Voices of Multiple Sclerosis: The Healing Companion, with more than 30 individual stories about dealing with the condition:

States Diane: “LaChance Publishing has sold books filled with the personal stories of those whose lives have been touched by breast and lung cancer, autism, Alzheimer’s, and most recently multiple sclerosis. The “Voices of…” book series is critically acclaimed, and 100% of the net proceeds go toward the foundation Debra LaChance has started. Read about The Healing Project and buy a book for yourself or a loved one who is dealing with a health condition in the book series.”

“When I was first diagnosed with MS, I searched (and purchased) any MS book I could find. I still have them all. But, with the exception of a few autobiographies, there were no stories about the experiences of regular people. I had learned the technical aspects of my new friend (multiple sclerosis), but I would have given anything for a book like The Voices of Multiple Sclerosis. Not only does it cover, in easy-to-understand terms, all the facts about MS, but it is also filled with short stories written by others with MS, as well as those who care for someone with the condition. And unlike many other books, it is light-weight and easy to hold. I couldn’t put it down until I’d read every story. I am honored to have one of my stories included in this book.”

***Voices of Multiple Sclerosis is available in bookstores, at online booksellers ( Amazon.com), in most major libraries, and at LaChance Publishing. This would make a great holiday gift for the newly diagnosed, veteran MSers, or anyone who wants to better understand multiple sclerosis.


Posted in Book Reviews, News / Research

MS News Updates

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It’s been a bit of a crazy week here at the Jersey shore, and so I’m posting a catch-all of latest news. Hope this finds you well and happy:

Joan’s Next MS Chat Room Session: This Friday, Oct 23rd

Come enjoy a Halloween party with Joan and her fellow chatters. The session is from 7 – 9pm, Eastern Standard Time. All are welcome, and more info and login instructions are available at her blog A Short in the Cord……… Joan’s chat is THE BEST!!

Glenn Close’s Mental Health Website

I learned about this site just this morning, as actress Glenn Close and her sister Jessie told of Jessie’s long battle with bipolar disorder on ABC-TV’s The View.  Having struggled with depression since multiple sclerosis altered my life course, I am a HUGE advocate for mental health and bringing knowledge to the forefront. So many people hide their emotional problems because of embarrassment/shame, misunderstanding, and doubt. I seek the ongoing help of a social worker and a psychiatrist— I take an antidepressant— and I want to pass this helpful site on to you and anyone else you might know who is afflicted by emotional illness. There’s help and support: www.bringchange2mind.org

MS Strength has Reached its (First) Goal of $100 in Ad Revenue

It’s taken over a year, but MS Strength has reached the $100 threshold needed for Google to pay out ad revenue. 100% of the profits will be donated to the National MS Society (the U.S.), who has a high priority of using funds towards MS research. The thermometer is set back to $0, and the next donation will be made at the next $100 threshold. Thanks to those who helped the thermometer rise; it feels great to take this money and donate it to our MS cause. A future post will tell about the actual donation, as I am currently waiting for Google’s check. 🙂

A New Website for MSers Which Chronicles 5 Patients’ Journeys and Distributes Information about Disease-Modifying MS Medications

I, along with 4 other MS webwriters ( Lisa, Julie, Kimberly, and Bill) have been hired to video blog our multiple sclerosis stories—along with personal journal entries— at a new website sponsored by EMD Serono, a maker of one of the current disease-modifying MS medications and a future MS medication. The site focuses on our stories and it also provides drug information to those who subscribe. As a HUGE advocate for newly-diagnosed patients learning about and trying disease-modifying medications, I’m proud to have been tapped and I feel myself helping others to weigh their medication options, no matter what the brand and the final decision. Thanks, EMD Serono, for allowing the 5 of us to accomplish this: www.howifightms.info

A Local Piece of News About Officials “Spinning Wheels for a Day”

This story caught my eye— I found it at the Nat’l MS Society’s FB page. Interesting, and it gives those in charge a chance to see what others with adaptive devices must navigate on a daily basis. I doff my hat to you, fellow resident Jackie Jackson: The Star Ledger’s Oct 15th Middlesex County News


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MS and Genetic Research Survey

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I read this on Lisa Emrich’s website and felt the need to pass along the information:

Earlier today, I was contacted by Virginia Hughes who is a freelance science writer with a special interest in genomics and disease, specifically autism and schizophrenia. She is participating on an ethics panel at the 2009 Cold Spring Harbor Laboratory (CSHL) conference on Personal Genomes. Virginia says that “they’ve asked me to comment on what I think is the current and future appetite for genetic testing among people who belong to various disorder advocacy organizations, such an MS organizations.”

Virginia is looking for solid numbers to include in her presentation, so she created a survey about our thoughts on Multiple Sclerosis, Genomics, and Genetic Research. The survey is simple – only eight short questions. Virginia would appreciate receiving at least one hundred responses so that the results might show some meaningful trends. Perhaps we could spread the word and get even more than that.

Please complete the survey and be sure to mention the MS blogs and groups where you often read MS-related information.

Thank you,

Lisa Emrich
(Brass and Ivory)

***Feel free to copy/paste this post in its entirety and post it on your blog and at your favorite MS forums, message boards, and social networks.

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My Interview with a Journalism Student

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I recently had the opportunity to be interviewed by Madeline Eubanks, a journalism student at the University of Washington. She was piecing together a story about the benefits of technology for MS patients. Another writer and I were mentioned for our websites, as well as MyMSMyWay.com for its technology collaborative.

Interesting piece:

People living with multiple sclerosis are using blogs to create a network of similar patients to share tips, experiences and important information.

MS is an autoimmune disease that targets the central nervous system when the body’s defense system attacks the myelin sheath that surrounds the nerves, disrupting nerve signals. This chronic disorder can lead to disability and death.

“I was looking at my son,” said Jaime Hagarty, an MS patient, discussing one of her MS relapses. “And I couldn’t even tell you what his name was. I knew he was my son, but I just couldn’t match that up cognitively.”

Hagarty said that when she was diagnosed in 2004, she felt like she “lost control” over her life. In March 2006, Hagarty started a blog called My MS Journal (http://mymsjournal.blogspot.com/) as a “creative way” to deal with her illness. Within a week of opening the blog, Hagarty received comments from people “all over the world.”

“I didn’t think that anyone would care about what I had to say,” Hagarty said. “I never expected to have the response I did because I never figured anything I had to say, and what I was going through, would mean anything to anyone else.”

Hagarty has been named a Top Health Blogger by the Multiple Sclerosis Community of Wellsphere.

“I realized that there were people out there with MS who were going through similar things,” Hagarty said. “I realized there was this great network out there. That really inspired me to do something more than just a journal. I started to make it a one-stop shop for people with MS. I wanted it to be a resource for others going through the same thing.”

Hagarty’s blog has not only helped other people. She’s also helped herself. “My blog has saved me. When I started my blog, it opened up a whole network of people like me,” Hagarty said. “It has helped me understand my illness.”

Jennifer Gerics, age 38, was diagnosed with MS in 2005. Gerics maintains a blog called MS Strength (http://www.msstrength.com/). She started blogging in 2008.

Gerics covers a wide variety of topics. Some of her topics include book reviews such as “Women Living With Multiple Sclerosis” by Judith Lynn Nichols, MS off-market drugs like Low-Dose Naltrexone (LDN), and the first World MS Day on May 27, 2009.

“I just wanted to tell my story and give others positive encouragement,” Gerics said.

Blogs are one of the several technologies MS patients are turning to. On July 16th, MS Technology Collaborative, a team sponsored by Microsoft, Bayer Health Pharmaceuticals, and the National MS Society, launched the three “Brain Games” to help MS patients exercise the visual, dexterity, and cognitive functions of the brain.

Ellen Kampel, a public affairs manager at Microsoft, is a co-author of the Tech Connect column at MyMSMyWAY.com, and has lived with MS for thirty years. She has also tested the Brain Games.

“It’s kind of like brain aerobics,” Kampel said.

Kampel’s MS symptoms include temporary losses of vision and the muscles in her hand “locking up.” When these symptoms occur, Kampel uses other technologies such as voice recognition software.

“It’s important that technology can adapt to the changing needs of the individual,” Kampel said.

Elizabeth Morrison is a physician at Cascadia Multiple Sclerosis Center, a clinic that serves about 320 MS patients. She has a mild case of MS. Dr. Morrison is also on the MS Technology Collaborative steering committee and was a beta tester for the games. She has referred the games to some of her patients.

“It’s nice to have something free and online and easy to access,” Morrison said.

Dr. Morrison also mentioned the Snapshot Tool of MyMSMyWay.com that indicates symptoms patients are having, such as cognitive issues or motor control problems. When the basic symptoms have been found, the Snapshot Tool guides people to different resources, such as text readers or voice activation.

“The sky is the limit when you have resources,” Morrison said. “There are all kinds of amazing technologies that are available for people.”

Hagarty is “grateful” for the assistance technology has given her, especially for the network her blog uncovered. “It’s nice to have that support system,” Hagarty said. “It’s nice to know that you’re not alone.”

Posted in Blog, News / Research

MS News

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Decreased Cancer Risks for MS Patients?

A recent Swedish study yielded an interesting statistic about its country’s multiple sclerosis patients: there was a noted lowered risk for developing various forms of cancer. Dr. Shahran Bahmanyar (of Sweden’s Karolinska Institute) lead this study which tracked the records (over the course of 35 years) of roughly 20,000 Swedish MS patients v. approximately 200,000 people without MS.

Findings included a 10% lowered risk for a number of cancers. Specific types included pancreatic, ovarian, stomach, lung, prostate, and lymphatic. Says Dr. Bahmanyar, “We speculate that the lower risk for cancer among people with MS could be a result of lifestyle changes or treatment following diagnosis.” The lowered risk was also slightly more pronounced in female MS patients.

*For more information about this study, see Medscape Today.

The Global Idea: A Community Blog for Travelers

Do you ever wonder where you can find helpful, practical tips for your vacation that pinpoint easily-accessible transportation, tourist sites, and accommodations? And do you want to inform others about the great travel tips you’ve already learned? Well, some wise folks at the website The Global Idea came up with a fantastic idea: a travel Wikipedia (an online encyclopedia which is updated and changed by its readers) for those with special travel needs.

The Global Idea is set up with a main page (featured travel destinations and instructions for contributing are presented here), a FAQ page, a help page, an online store, a travel blog written by the creators, a link to important websites, and an extensive destinations index which spans the entire globe.

*Visit www.theglobalidea.com to access this travel Wikipedia.

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Your Input: National MS Society Survey

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The National MS Society is conducting a survey to learn more about MSers’ wishes for the organization. An overhaul is currently in the works, and the Society’s development specialists want your input. I’ve been asked to present the link to this survey at my site (it is the same survey recently presented at Brass and Ivory) in order to assess MSers’ needs and wants. Please take the time to make your voice heard: Do you want more Society online community/interactions? Do you want more outreach programs? Do you want more fundraising activities? Let the National MS Society know your wishes:

www.nationalMSSociety.org/srsurvey

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Early Smoking Linked to Increased Risk for MS?

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Recent research about multiple sclerosis and smoking has peaked my interest: I learned to smoke when I was in eighth grade and although I was never a regular smoker, I did do it at parties in high school and college and beyond. Also during tense conversations with friends as almost a “bonding” mechanism. This is probably considered recreational or social smoking, which I’ve been able to tame as of late, but I recently became curious about the notion that EARLY smoking habits might affect the chances of developing MS. Here’s what I learned:

A new scientific study reveals a possible link between smoking at an early age and developing multiple sclerosis. Johns Hopkins University of Medicine, in collaboration with the Veterans Affairs MS Center for Excellence, recently conducted a study with MS patients— 87 in total— to determine the likelihood of developing MS if a patient was an early smoker (under the age of 17 when beginning the habit), an older smoker (starting above age 17), or a nonsmoker.

Out of the study participants, including 435 individuals without MS, early smokers were 2.7 times more likely to develop multiple sclerosis compared to nonsmokers. Older smokers were not found to have any more of a risk than non-smokers.

*For more information about the study and related materials, see Johns Hopkins Medicine.

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World MS Day 2009

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Today marks the FIRST World MS Day, which is an international attempt to unite the world in MS awareness, knowledge, political action, and camaraderie.

Here are some ways that nations are getting involved:

  • Argentina: requested day be formally recognized by government
  • Australia: reception in Queensland
  • Belgium, Canada, France, Luxembourg, Switzerland: “Roll for MS”
    sponsored cycle/ motorbike event
  • Denmark: fundraising event
  • Finland: city wide awareness-raising event
  • Hungary: event in parliament
  • India: human chain awareness-raising events
  • Ireland: activity to promote member development
  • Italy: moved national awareness week to include the day
  • Netherlands: Global Dinner Party/ Second Life event
  • Norway: research conference in Oslo
  • Romania: Global Dinner Party
  • Slovakia: Dignified Life with MS seminar
  • Sri Lanka: week long awareness raising events
  • Sweden: fundraising event
  • Turkey: concert and gala dinner

Interesting Tidbits:

***The United States National MS Society urges everyone to petition their federal legislators to support comprehensive and accessible health care coverage that includes the Society’s Health Care Reform Principles. This would ensure that all Americans with MS get proper medical care.

For more news, events, and information about World MS Day, visit www.worldmsday.org

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Cathy Needs Your Help!

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Cathy, one of my Facebook buddies and the blog author over at Navigating the Journey of MS, is looking for some ideas for her line of MS shirts. So she’s throwing a contest. Have a look:

Attention creative people:

I am looking to add a few new shirts to my product line….I am looking for a few good and clever MS-related sayings to put on these shirts. I want to have a contest so my readers can vote on them and the winner or winners will receive a free shirt.
Sounds good?….

So if you are one of these creative and clever people who would like to win this contest (for bragging rights, of course), please email any ideas to info@themsshoppe.com.

I have a few ideas but I would love your input. A few rules…Nothing religious, nothing political, nothing racist and no swear words (or keep it to a minimum.) LOL…Thanks for your help. I know some of you are very creative, so let’s get that creative side of our brains going! Rah rah rah!

Cathy

www.TheMSShoppe.com

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