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  • Howdy!

    Originally posted by bski864 View Post
    Ahoy there!

    I thought I actually had an account here, but lo and behold...I was so wrong. So I just got this fancy account today, even though I've been stalking ActiveMSers and Dave for years. Woops.

    I'm Beth. I've had RRMS for 16 years now. Got diagnosed at 17 right before senior year (THAT was a "fun" year, oh man). I guess, in hindsight, it ended up being a good thing, because it made me look at myself with a more critical eye, and got me up and more active. Like...I run now...regularly. If you'd told 17yr old me that I'd be running 3-4 days a week, she'd have laughed in your face.

    I started on Rebif...moved on to Tysabri after I became immune to Rebif...stayed on Tysabri for about 7 or 8 years (astounding)...moved to Georgia which meant a new neuro...bloodwork came back sliiiiiiiiiiiightly positive for those JCV antibodies, and I decided I don't like Russian roulette...went on Copaxone (it failed me)...been on Gilenya for about 2 years now.

    I am super bad at intros, and a giant weirdo nerd. So...hello and nice to meet ya!
    Wow that was a young age for M.S. to start. I was typical, 42 years old when I got mine.

    I was on Avonex for 18 years until my insurance company decided they didn't want to pay for it anymore.

    Doing OK without in now, 10 months without. Just Baccolphen for the spastic muscles is all I take now.


    Lots of good info here, and friendly folks to help with questions.
    Retired engineer, now hobby farmer with goats, chickens, an old dog,and a lazy barn cat!
    Watch my goats at GoatsLive.com
    Active in amateur radio
    Linux geek, blogging at lnxgoat.com
    M.S. since 2000

    Comment


    • Originally posted by bski864 View Post
      I am super bad at intros, and a giant weirdo nerd. So...hello and nice to meet ya!
      Beth! So great to see you on the board. There are a lot of weirdos here, so you'll be right at home.

      Gilenya is an effective DMT. And thanks for abandoning your stalker tendencies (you too Heather!).
      Dave Bexfield
      ActiveMSers

      Comment


      • Originally posted by ActiveMSers View Post
        Beth! So great to see you on the board. There are a lot of weirdos here, so you'll be right at home.

        Gilenya is an effective DMT. And thanks for abandoning your stalker tendencies (you too Heather!).
        Yay team weirdo! XD

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        • Hello

          Hi I am Rox and not a neurologist. RRMS 20 years, started treatment about 2 years ago. Different times, different doctors. I am on Tysabri. I am able to do pretty much everything except spend money.

          I live in a city and walk on big hills to get places every day. So I’m active but don’t really schedule exercise. So far so good, but trying to up the exercise ante.

          So far MS has taught me doctors aren’t perfect, life is a chronic condition (so keep living!), and I’m glad we are all here for each other! Thanks Dave!
          Last edited by neurox; 09-15-2019, 12:33 PM.

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          • Hi

            Hi, I am new to this forum, wanna share my experience and learn new things from other members of the community.

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            • Any other athletes out there clawing their way back up?

              Hey guys, I'm Kate. *waves*

              The Backgrounder: My symptoms started a year ago with heavy and hot/cold feelings legs in November 2018. I thought I was overtrained - I trained Crossfit 5 days a week, 2 hrs a day, and teach full time. So I scaled my workouts back to zone 1 heart rate workouts, and improved over December. By January 2019, I was competing in a local comp and crushing it. I competed on an elite team in Washington in April 2019, and was the fittest I've ever been. Except for that my balance was still a little off... and this weird shiver down my spine...

              Fast forward to end of June 2019, absolutely crushing qualifier workouts and training to compete as an elite individual woman, and all of a sudden, my right leg is SO tight... and it's not really working...and my feet... numb.

              The day before I left to compete as an elite individual in British Columbia, my MRI came back passing the McDonalds test for MS in July of this year (2019), and then officially diagnosed with RRMS in September.

              I started Glatect (basically the same as the Copaxone daily injections) about 3 weeks ago, and FINALLY feel like I'm getting somewhere after months of what seemed like relapses every few weeks (left hand numbness...face twitching...crazy pings of sudden vertigo...new weakness in my core...). My right leg is still tight, feet still numb, but at least it SEEMS like I'm getting things back to some extent, although I'm still turning into a bit of a wet noodle when my body heats up mid-workout. Speaking of wet noodles, up until about 2 weeks ago, I was a pretty big puddle. This has been a huge blow to how I lived my life, my mantras, and my identity.

              The main point: Any other athletes that fell from the top of their game to climb back close to where they were? I don't think training as hard as I was is a good idea, nor feasible anymore - too much on my CNS. I just want to get more of my fitness back for me. There are quite a few of those really inspirational "I have MS and run marathons" which is totally awesome - but I've only encountered people who weren't that active before being "fitter than ever before." Any stories or tips of athletes who made their way back to almost full recovery after relapses? Physios don't really know what to do with me because I can hit a set of back squats at 200lbs, but my muscular endurance in my legs has kinda gone to crap. I'm definitely not at the front of any lists for help through the Canadian medical system since I'm so high-functioning. What they fail to recognize is that it is still below my baseline, so I'm kinda left to my own devices if I want to see improvements. I know just trying to blaze my way through this won't work - trying to be more strategic than that!

              Thanks for reading if you did (*welp* long one!) Looking forward to learning from this forum!

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              • Welcome aboard Nizzer although I am sorry you have to go through this. I was never an athlete but always a physical person. Lifted weights through most of my life, worked in construction, spent a lot of time in the woods. In my late thirties after work I was squatting double my bw in my workouts, now at 42 I'm using the weight I used to warm up with. I like to think I'm getting stronger again, just starting at the bottom and it might take longer this time. This seems like the right place to draw inspiration from, keep going, progress is progress even when you have a setback. When weight training as you know, it's common practice to work up in weight till you seem to stall, then reset with a lower weight and build up again, I just look at a relapse like I need to reset. Sorry for being long winded, but I felt like I could relate.

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                • Hi Kate,
                  Growing up I was an athlete - gr 10 athelete of the year, Pony Club champ, soccer, ringette, hockey. After uni I was still active in rec league soccer and ringette, still owned a horse although not competing, and in the year before dx also started competing in novice mountain biking.

                  Diagnosed in fall 2003 after a severe bout of optic neuritis, had me so weak from fatigue walking the dog would leave me needing a nap. The ON resulted in permanent vision loss in left eye.

                  MS is a game changer. I sold my horse thinking riding would be out of the question, soccer was getting dangerous - I was colliding with other players and getting hit with ball because of the vision changes so quit that. Biking made me nervous.

                  I got my fitness and endurance back with yoga, gym, and easy bike rides.

                  It built slowly but surely from there. It takes longer to build up fitness because with MS there is a lot of two step forward/one back kind of thing - heat intolerance, relapses, etc. but it's doable.

                  I got back into horses, obtained my para classification and competed in dressage for a few years, still have my horse but we are weekend trail warriors now that he is a senior.

                  I got back into cycling, even did mountain biking and some downhill with coaching, today I am more of road/gravel grinder rider and do the MS Bike every year. Don't compete but like the participation challenge type events.

                  I have taken up kayaking. Love being on the water, in summer it is a way to get outside on even the hottest days without getting drained by the heat. Rely on friends to help with loading/unloading boat and gear.

                  I have also recently taken up swimming, I do this instead of gym as the water helps with the heat intolerance and I can get a great cardio workout.

                  Long story short, you don't have to give up being active with MS, you just may have to adapt and improvise a bit, make adjustments, like a cooling vest at the gym. Keep in mind that the MS body will need more rest and recovery than before, so make sure to allow for than in your training plan - keep it flexible, don't be afraid to cut a traning session short or ease up a bit, better than than the "MS exercise hangover" where you barely function the next day. Compete yes, but don't be too hard on yourself, last summer I did an adventure race, 32k mountain bike (easy trails), followed by a 32k paddle, it was 5.5hrs on course, my only goal was to finish, and ended up being middle of the pack at the end. it took me days to recover though!

                  Cheers
                  ~Karen in winterpeg
                  Callenge life before life challenges you - from inside collar of my "Bike Off More Than You Chew" bike jersey

                  Comment


                  • Drillerdou and cl3me - Thanks so much for your responses!

                    Drillerdou - yes, this is a total reset. I'm not sure I'll ever get comfortable with that. Things are coming back.. my heat intolerance seems to be getting better.. but I don't want to get too excited. It sounds like it can all leave quite quickly.

                    cl3me - really awesome to hear that you're still competing in some capacity, and in a 5.5hr race! That's wicked! Funny that you're also from Winnipeg.. stupid MB and our insane rates of MS...

                    I wish I liked swimming - hah! I may have to give it another shot by the time the summer comes up. My heat intolerance actually seems to be improving - I made it through a 46 minute workout the other day with many movements and didn't feel like I was totally staggering from one thing to the next, but it didn't include a lot of lower body.

                    Anyways, thank you both again for replying and sharing your stories. I'm sorry you too have to go through this, but it's somewhere to draw inspiration from. <3

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                    • Kate! (*waves back*)

                      To answer your main questionócan athletes return close to where they were before diagnosisóthe answer is "ish."

                      A number of professional athletes diagnosed with MS have attempted to continue their careers, but since the line between pro and almost pro is so fine, most are forced to retire within a year or two.

                      That said, with the significant improvement in available MS treatments, that could change. And even with athletes retiring professionally, many are still fully able to compete in their sport at an extremely high level.

                      As you know every case of MS is different. I had to hang up my snowboard three seasons after getting diagnosed, but I know others who are hitting black diamonds decades after diagnosis. So there's a bit of luck involved,too.

                      My best advice? Keep doing what you love, don't get hung up on PRs, and don't try to predict your future. Welcome to ActiveMSers!
                      Dave Bexfield
                      ActiveMSers

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                      • Newly diagnosed

                        Hi all, I just diagnosed in August of 2019 and it all happened pretty fast, although knowing some of the symptoms now, I can look back and see little bits of MS emerging in my life. It all came to a head when I was on vacation and I had stiffness and numbness in my right arm and also kept tripping. I thought I just needed a massage and had overdone it working out. The day we got home, I got massage and it didnt get better, instead a little worse and I knew something was wrong. Doctor visit same day, MRI the next day, neuro a week later, another MRI a week later and two weeks later a confirmation by an neuro specializing in MS. During this time, my entire upper body went so numb I didnt know if I was hungry. I also started getting muscle tightening so bad my arm and wrist would almost double over, this was terrifying. Steroids finally helped this subside and a week after the steroid injections I could start running again. The muscle tightening episodes would almost make me cry and this has been the only thing that kind of broke me. I'm pretty optimistic to start so I knew as long as I could run, I could stay same, take that away and well let's not go there. In late October, I started Ovrevus and I pretty much don't have symptoms anymore except I seem to be very reactive to cold and it causes muscle tightness in my face and I gave in and got a script for a muscle relaxant. I guess I'm unique in that the heat makes me feel perfect, like my old self. We just made it to Hawaii before covid hit and I felt amazing and energetic! Now my next infusion is on hold pending covid subsiding. I really enjoy the posts on this site. I believe in mind over matter and being happy and I love learning more about MS and people who have it and I'm glad I found such a positive site full of workout peeps!! Thank you!

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                        • RunHappy! Nice to meet you and welcome. Sorry to hear about your diagnosis. (Just an fyi, the first year or so is a bugger mentally, it gets better in that department!) Ocrevus is a really effective treatment and way to start treatment asap--it matters.

                          You'll find this is a motivating group of optimistic misfits, from marathoners to wheelers like myself. Be safe during this challenging time wherever in the world you call home and I do look forward to your updates.

                          Welp, gotta run, er ride. It's sunny and 70 here in New Mexico!
                          Dave Bexfield
                          ActiveMSers

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