The new faces of MS

When I was diagnosed with multiple sclerosis way back in 2001, I learned that that MS primarily affected women who were between 20 and 40 years old. Then, and now, MS affects two or three times as many women as men. Those statistics made it easy to pigeonhole the condition as one that mostly mattered to women of childbearing age.
 
But recently we’ve heard about several young men such as Jack Osbourne and NHL goalie Josh Harding who have been diagnosed with the MS. The latest news is that NASCAR star Trevor Bayne has been diagnosed. Bayne is 22. He plans to continue racing, saying that he’s in top form right now and that he’ll take the necessary steps to manage his disease. I wish him and the others all the best.
 
While nobody wants to be a poster child, Bayne’s public announcement that he has this mysterious disease reminds us all that MS can affect anyone, at any age, male or female, in any walk of life. It’s easy to dismiss or ignore a condition that you’re pretty sure can’t ever happen to you. But MS can happen to you. Maybe that knowledge will further expand the group of people committed to working toward a cure for this crazy condition.
 
That would be quite a silver lining.
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Jennifer

Jennifer LaRue Huget, Blogger

Jennifer LaRue Huget was diagnosed with MS in 2001. A freelance writer and children's book author, she lives in Connecticut with her husband, two teenage kids, and two brown dogs. Her website is www.jenniferlaruehuget.com.

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    24 Comments

  • Danielle (Nellie)   Nov 26, 2013 9:59 AM
    Hello Iam Danielle a.k.a Nellie:)) Ive had Multiple Sclerosis for 13 long yrs. It has changed my life. Before MS I could walk.drive.work and now, I cant. Im on this site t oo meet ppl that are real not fake.
    LIVELAUGHLOVEHAPPINESSPEACESMILE
  • James   Nov 26, 2013 10:25 AM
    Thanks Danielle for your comment I know that feeling I was diagnosed is September 2009 and they said I had it many years and didn't know it by all my MRIs I love talking to people with MS I just wish I knew some personally
  • Alison   Nov 26, 2013 10:35 AM
    Pretty scary isn't it when you're told you have this disease you know nothing about. I didn't know anyone else who has ms until I started going to hospital for tysabri once a month, now I know a few people and we swap experiences. Would prefer to have met them in a nicer place though...
  • Antonio Ross   Nov 26, 2013 10:49 AM
    I'm terrible with date I think I had it for 10 years.
    But know matter what u need a good support group
    And I was taking taysbari and just found out I have the
    JCV Virus so everybody be careful
  • Octavia  Nov 26, 2013 11:31 AM
    I am always surprised when I learn someone I know has MS or has a relative or friend with it. What I don't understand is why more people know what it is? On the other hand it is a unique disease for each person. It feels like a club that no one wants to belong to, but happy when they meet someone who genuinely understands. I guess besides trying to live well with MS journey, I am committed to using the moment someone asks me what MS is, to use it as a teaching moment , not too much but just enough to help them understand and support advocacy and finding the cause and a cure:) Happy Thanks giving I am grateful for the community.
  • Tom Biel   Nov 26, 2013 11:38 AM
    Jennifer: We few chosen to have MS did not volunteer. We were drafted.
    Thank you for the great Blogs.
    Tom
  • Sheanean   Nov 26, 2013 11:57 AM
    I have had MS for a good twenty years but just got the right diagnosis four years ago. I went right to avonex injections and suffered through them for three years. Last year, my doctor took me off of them because they weren't improving my condition and were hindering my ability to live a happy life. Injections don't reverse MS. Discovert in 2010 that MS sufferers lack the neurosteroid allapregnenolone is the hope we need. In a few more years, the replacement should be available. I am doing a supplemental therapy that consists of: magnesium oxide, multi minerals and vitamins, alpha lipoic acid, alpha linolenic acid, d3 with k2-mk7, b12 sublingual, b complex, gamma linolenic acid, riboneucleic acid, folic acid, phosphatacholomine, and pregnenolone. I have stopped all artificial sweeteners and fluoride and had all of the metal safely removed from my mouth. It sounds like a lot, but number one: I can't get affordable insurance with a pre existing condition for less than $850 a month and two: the synthetic drugs don't always mix well and have side effects and three: correcting the problem is the answer. Not medicating each symptom. I feel a difference in these supplements.
  • Robert   Nov 26, 2013 2:33 PM
    I have had ms for over 10 years I have been on most of the meds.for ms my body grows use to them so I have to change and have to change. I take gilenya one pill a day and for the first time the drug company is picking up myfeductable.
  • Avatar
    A_J_  Nov 26, 2013 2:41 PM
    Hopefully MS will get more attention. I certainly don't wish this on anyone, but it needs to get more attention. I'm almost 60, have had ppms for about 6 years, am fortunate to have insurance through my husband's business and will get full medicare in July.
  • Elizabeth Parker   Nov 26, 2013 3:19 PM
    I've been diagnosed since I was 25 or 26, so 16 or 17 years. I'm pretty darned sure I started having symptoms when I was a teenager (as early as 9th grade), but of course they were weird things that were interesting, not reportable to my parents. Much better for people to know and hopefully pay more attention since there's some hope now.
  • Hello it's me   Nov 26, 2013 3:25 PM
    I found out I had it around the same time as Jack Osbourne. You know what? I think it attacks people that are just too hardcore for their own good. llmlll^_^llmll I will fight back moshpit style!
  • Carl Zellner   Nov 26, 2013 4:43 PM
    I started showing symptoms way back in 1976, although they did not really get bad until 1980. I went through testing, ENG, EMG and others I don't even want to remember until 1989 when FINALLY I was diagnosed. I have doctors for 15yrs saying I was crazy, so when I was told I had a smile on my face. Yeah, it was MS, but finally had a name and a mission to beat this. My MS mainly affects me in that I show all symptoms of being a drunk, and it is RR type and hit me often as stress would bring on attacks. I was employed at the time as a Deputy Sheriff, and had been since 1976 and was until 2001 when I went on disability. Both of the Sheriff's I worked under were told of my problem and worked with me. One term that I had to live with as far as work went was I could not be a liability. Once I realized that someone might get hurt because I could not give them backup or I could not handle the situation because of the MS then that was the time to leave. To this day, I still miss the work, the people, and the men and women that I served with. I am proud that I made it as long as I did, but I am mad that the MS took my profession away from me. To this day, this is always in the back of my mind. If the MS was cured, and my job was offered to me, I would go back in a heartbeat. I am almost 60 now, and realize that for me its too late, but not for the younger generation.
  • Avatar
    Angie390  Nov 26, 2013 5:21 PM
    I am very interested in all the supplement info that was posted by Sheanean. Any chance that person can give up some more info?
  • Shannon   Nov 26, 2013 5:40 PM
    When I go to the luncheons that the Rebif people sponsor, I am surprised that there is usually at least one black man there and they are usually worse off than the rest of us, like in a wheelchair. It surprises me because a black male is a double minority in the MS world, black and male. I have gone to these luncheons in two states and noticed this (Tx and Fl). Has anyone else noticed this?
  • Jessica   Nov 26, 2013 8:39 PM
    Hello all. I was diagnosed in April 2001, a month before I turned 16. I remained active in high school, running track, dancing ballet, ect... Now almost 13 years later, I still remain active, I hike, swim, ride bikes, play softball, kayak, and am training to run in a 5K! I have MS, MS does not have me!
  • Charmaine   Nov 27, 2013 12:22 AM
    Hi. I was diagnosed just over 1 year ago. I am fortunate not to have physical symptoms, mine are more cognitive, not sure what is worse actually :-). I can however say at this stage that it is not a curse, it does not effect my day to day and I hope it stays like that. I often read all the comments posted by people and wonder what it is actually like for them when they say MS is a curse, how have they been effected? What is it like? I am not there yet and so cannot imagine not being able to do what I do on a day to day basis because of MS. Again, I hope it does not happen. I have not met many people who suffer with MS and as you all know it does differ person to person but I would love to have an interactive group I could be a part of. I am on avonex and hate the injections, they are rather painful so looking forward to the day there are tablets available in SA that I can start taking instead :-). Good luck to all of you and I hope for nothing but the best for you.
  • morris,miami fl   Nov 27, 2013 12:56 AM
    I'm 25 I had ms bout two years I was takin rebiff but the side effects is painful I lost my job n have no insurance I also lost my vision on my left side I'm still confuse bout ms I really need help or some medicine all the medicine I get now is cheap or not working for me cause I have no insurance
  • LAURIE GARVIN   Nov 27, 2013 9:35 AM
    It is reality that our community must use those who happen to be famous to help promote this illness. Everyone diagnosed must be willing to share our story
  • toni kaucher   Nov 27, 2013 9:38 AM
    My three ,yes three daughters have ms. Its always a rollercoaster of drs., new meds, and praying. The best thing they did for themselves was to have a healthy lifestyle. Every day I pray they don't have a flare up. Positive attitudes go a long way and the hope of a cure!
  • Abby Green   Nov 27, 2013 12:32 PM
    I was dx 3 years ago when I was 52 My MS Doc said I probably had for sometimes and the way my Symptoms got worse even tho on meds I believe it too I have poor balance stiff legs and speech defect (that was my first symptom) My fatigue level is short too I on Tysabri Amprya Baclofen other meds vitamins and supplements Nothing really helps so far My hubby is my hero he does most everything Prayers for everyone hang in there I AM!!
  • Samantha   Dec 15, 2013 10:17 AM
    I have just recently been told that I most likely have MS. I am not all too familiar with MS and don't know what to expect. I am scared and would Like some advice on how to try and prevent it from taking over my life. What things should I try and avoid doing. No diagnoses yet but I have optic neuritis and lesions that showed up during the MRI.
  • hchunter  Dec 17, 2013 6:41 PM
    When you're an older male - diagnosed at age 48 - the statistics don't matter any more. Yes, I'm not the typical age/gender for an MSr, but it really doesn't matter. I have all the issues everyone else lives with, and it bites.
  • Tim   Dec 18, 2013 7:35 AM
    Hi All, I was just diagnosed a week ago at age 29. The strange thing is that it hasn't sank in. I really haven't had a chance to slow down and think about it since I was diagnosed with holiday prep and work. It is hard answering all the "what now" questions that my family and friends ask. I have tried looking for the right answer, but I don't think there is one. "just keep living day to day" has been my go to answer. I really appreciate the blogs on here. I don't know anyone with MS so its nice to see peoples stories and positive attitudes. I hope you all have a happy holiday season.
  • Gloria   Jan 11, 2014 4:42 PM
    My daughter was diagnosed with MS 2 years ago at the age of 13. She
    Has been taking rebiff (3 day a week injections)and her doctor recently changed her medication
    To the daily injection copaxon she is refusing to do daily
    Injections. The news that rebiff was not working and more lesions emerged
    Were devastating for her, my husband and I. How can we help our daughter understand the importance of taking the medication or maybe going natural is an area that deserves our attention. I'm feeling helpless.
    I don't know much about this new medication if anyone knows or uses this medicine and would like to share their experience this may be very beneficial. To all those living with MS I give you all my respect you are strong people. Stay strong