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  • #46

    I don't officially have MS. I was diagnosed today with "clinically isolated syndrome". I started having MS-like symptoms back in December of this past year (dizziness, numbness, tingling, muscle spasms, cognitive problems, muscle weakness) and just got the results back from my MRIs - I have a lesion in my cervical spine.

    I've been a marathon runner for 5 years now - I've run 9 marathons and am running the Boston Marathon two weeks from today. I'm scheduled to get a lumbar puncture as soon as I get home from running that to check for proteins.

    It's great to find this site - to know that even if MS ends up becoming a reality, or even if I'm just stuck dealing with similar symptoms from a single lesion in my spine, that there are people with the disease that are still out there being active and living life to its fullest.

    I don't have any plans to quit running - I'll keep going as long as my legs hold out.


    • #47
      Originally posted by RunninGirl View Post

      I don't have any plans to quit running - I'll keep going as long as my legs hold out.
      Good for you!!! Having MS hasn't stopped me from being active either. Infact, I recently added commuting by trike.

      Like you, I'm going to continue being active as long as I can. This site is a good resource to help with this goal.


      • #48
        Brand new to this forum

        I'm, going to be 49 this year.
        Last year, July 2009, I had a devastating accident, I fell and had severe head and neck trauma, a severe chest contusion, and dislocated my left thumb. I had surgery to repair my thumb, and several months of rehab, due to the trauma.
        The symptoms that presented after the accident, seemed to tie-in with the fall. However, many of the symptoms didn't. Through 2 MRI's, a spinal tap, and blood serum tests, it was revealed I had MS. My first MRI revealed a "walnut-sized" cyst, in the center of my brain, and 12-16 active lesions, throughout my brain. The spinal tap and blood serum tests, confirmed the diagnosis.
        At the time, I was working, and was on vacation, unfortunately, I never returned to work, from that vacation.
        I have been slowly recovering from all of this, but have been told returning to work, is impossible (also I lost the ability to drive a vehicle). Needless to say, I'm now permanently disabled and was just recently approved for SSD.
        I want to get back to exercising, and have been debating it, because of the effects it may cause with my MS symptoms. More details on that, in a future post.


        • #49

          Hello, my name is Janice. I am 43 years old, married and have a large family with kids from college to age two. I was diagnosed and undiagnosed and diagnosed from september 08 to December 09 and started avonex in Febr. of 10. It kicks my day a week and am considering a switch to copaxone. Right now, the DMD causes more difficulty than the disease and that is hard to accept...although I am thankful that so far the disease is mild.

          I am trying to stay active in more ways than one. My family keeps me going but I also have been walking or going to the Y to do the elliptical and lift weights. MS has also encouraged me to fix up my violin and start playing again after more than 15 years. I have started doing cognitive games and crosswords to keep active. I also have been doing things I used to pass on, for instance at the water park...I did all of the slides except the one known for head/neck injury (trying to be smart about it

          Although MS stinks, it has made me live for today instead of waiting to do it tomorrow.


          • #50
            New Member

            I found this site while researching a new cooling vest. Glad I found it.

            I go to an MS support group, but feel like an anomaly there, most of them no longer work or stay really active.

            In 2008 I did the MS Challenge Walk - 50 miles in 3 days even though my MS specialist 'strongly discouraged' me from walking that far. I walked 47 of the 50 miles, I decided Torrey Pines was an awfully big hill! Anyhow, when somebody tells me I can't do something, I have to prove them wrong.

            I liked the article on cognition and staying active...I'm contemplating joining a fitness Bootcamp, but fear working part time, staying active, and keeping up with kid activities - sports and Scouts, might put me over the edge with MS.

            On the other hand, I think some good exercise would 'wake up' my brain in the morning. Now, I feel like such a slug when I wake up! I was walking 25 miles/week prior to my last MS exacerbation.

            The other thing I find is that my calves are really tight, so I have to stretch more than I used to and even then have problems. I took Baclofen for a while with good I guess I could do that again.

            Any tips on staying cool, and tightness (spasticity?) would be appreciated.

            Glad I found this site... I also appreciate the large font!



            • #51
              I found this site through the YouTube video. Cool BTW. I am 30 years old, female, married, 3 kids. They are ages 7,4,1. See a pattern in those ages? Accident.

              Now that you have the details, I'll give you the info you REALLY need. I was DX with RRMS 6 years ago, but I KNEW I had it 9 years ago. (long story there folks). I'm in a clinical trial for Teriflunimide. I stay fit with my new YMCA membership. I go to work out just so I can drop the aforementioned children off at the daycare....ahhh PEACE. Okay, okay, so the Yoga, water fitness with the "gray hairs," and occasional Pilates are a good reason for going too. My goal is to do the "Body Pump" class...someday. I'm not pushing it.

              So, you should realize by now that I have a sense of humor and I'm not afraid to use it.


              • #52
                Hi Teresa,

                My name is John. I am 42 and was also diagnosed with MS in 2005. I began running 3 years ago and just ran my first marathon last month. At around mile 20 I had issues with fatigue and overheating and would like to hear from other runners with MS and how they cope with this and other issues on those long runs.


                • #53
                  My Name is Amy, I'm 34 and I was diagnosed in 2005. I started running 6 months ago and hope to run my first 5k in a few weeks. My goal for the year is to run the Baltimore half-marathon in October. I wish I could find someone with MS to run with in Maryland.


                  • #54
                    Hi everyone! My name is Wendy and I'm from California, but I've spent the last 25 years in Georgia. I got very sick during a knee replacement and 4 months later was diagnosed with MS, at the ripe old age of 59. I was immediately put on Tysabri, that was 1.5 years ago and I'm still on it. I was very active before, then spent a gloomy year sitting in the house, battling with the MS. I am finally coming back to my old self. I'm looking forward to getting to know all of you!


                    • #55

                      Quick intro:

                      Diagnosed in 2007 with RRMS. Had to overcome my fear of needles rather quickly, since my DMD of 'choice' is Betaseron. And, Thank You Lord, for the invention of the auto inject device

                      I am a very happily married woman and proud member of the Red Hat Club, cough - where have the decades gone?

                      I look forward to meeting everyone here and exchanging info.

                      Found you via Patients Like Me.
                      Certified Life Coach

                      RRMS - D/X 2007


                      • #56

                        I found this site while looking for information about Running and patients with MS. Great Site, hope to meet some new friends

                        I'm 34 years old. Was diagnosed last February after everything out of my left eye went double... Had the iv steroid treatment, and knock wood, everything has been pretty good since then. Finding out that I have MS explains the weird eye stuff and chronic fatigue... I thought it was the full time job and two kids, lol...

                        Since my diagnosis I have been trying to live every day to it's fullest. I started practicing yoga which has definitely helped me feel better mentally and physically. I also decided to run my first 5k race last September. I'm hoping to run a few more races this year, and I am also busy raising funds for the WalkMS at Jones Beach here in NY on May 1st.

                        Thanks for having me here, it feels good to know I'm not alone in this


                        • #57
                          Nice to meet you, Ruby!
                          Certified Life Coach

                          RRMS - D/X 2007


                          • #58
                            I was diagnosed on January 17, 2010 (but who's counting, right?). I'm 37 and have RRMS.

                            At the time, I was 260 lbs, and was doing a lot of weight lifting. I noticed that I had lost power in my left arm during some exercises, and my hands were tingling all the time. I was helping coach a pee wee football team at the time, and noticed that I couldn't run routes properly. I couldn't "cut" sharply anymore. When I tripped on a cobblestone, because my left leg didn't work quite right, my wife made me go to the doctor.

                            Sites like this one, and the MS bike event helped me use my diagnosis as a challenge to change how I live my life. The week after I was diagnosed, I signed up to do the MS150 in my hometown. I hadn't ridden a bike in 10 years. I started a team with my friends and family. I finished the 163 mile ride four months later. That was when I realized that just because I have MS, I'm not made of glass. If I fall over, I just get back up.

                            I'm proud to say that I am now in the best shape of my life. I'm 70 lbs lighter. I did the MS 150 again this year and got to ride with my wife - how cool is that! I finished a half Ironman a few weeks ago, and when I finish Ironman Cozumel in November, I am going to get the "M dot" tatooed on my left leg, right on the spot that tingles when my MS acts up.


                            • #59
                              What an inspirational story Bansheee. Thank you for making my day! And welcome to the forum!


                              • #60
                                Hi Everyone,

                                I am so glad I found this site, what a cool idea!! I found this site while searching for MS150 training ideas. I am riding in the MS150 this year. )

                                Okay, a little about me....I was diagnosed in September 2006 after experiencing numbness and a pretty bad exacerbation. Since then I was put on a DMD (disease modifying drug) and was told to take it easy and not exercise because it could cause further exacerbation's.

                                Well, about two years ago I discovered that exercise was probably the best treatment for me. I felt better and the disease appeared to be less active when I was exercising regularly. I am careful to take good care of myself and listen to my body...but I feel exercise is my number one and most important "DMD"

                                I've done two 50 mile endurance walk and ran my first half marathon last year. This year I decided to ride in the MS150. I try to challenge myself physically at least once a year. To be honest, it's been fun to see exactly how much I can still do with MS (it's a lot!!)

                                Oh, I am also a National MS society self-help support group leader and am very active in the community through volunteer work. Oh, and I live in Colorado with my husband and dog.

                                Nice to meet you all and thanks in advance for inspiring me to be even more active with MS.