Active MSer? Introduce Yourself Here!

[jenisdif]

Hi active MSers

Hello all! My name is Jen DiFilippo. I am a 28 yr old mother of 2 (4 & 5). I was diagnosed at 21 w/ RRMS 4 yrs later I moved and my new neuro diagnosed SPMS. So needless to say (and yet i do) my MS is an aggresive form. I have never been one to "woe is me", with my feet firmly planted in reality, I completely accept MS is going to happen for me, I may end up in a wheel chair 24/7, I cannot drive, I cannot do what I used to, my mind may go, but it hasn't yet. I intend to do everything I can while I still can, and help those I can while I can cuz someday will need help too.

I think that denile of ur MS and pushing to hard to do things just like u always have, is the real way MS wins. U can be all gung hoe and "I will not let MS stop ME from ...." the reality is MS is gonna do whatever it wants to whom ever it wants, u do not get to motivate urself out of MS. To win w/ MS is to do what you can, even though MS makes it harder 4 u. Thats what I consider being active w/ MS, knowing your limitations, knowing MS will take its toll and still doing what u want to do. Maybe not as far or as fast as u once did, but u still do.

[Marky-Mark1]

Awesome site!

Hi, everyone.

I have a very supportive wife and 3 kids. Last year I turned 40 and was feeling great. All of a sudden, all sorts of problems came up out of nowhere and I was eventually diagnosed with MS in Dec 2011, right after Christmas. I freaked out and did what most people do: jump on the computer and google MS info. Of course this was a big mistake! I finally found this site and no longer look at other sites other than NMSS. I love this site. It is very positive and helpful, and Dave has a pretty good sense of humor!

I'm probably more active now that I have been diagnosed. I wasn't a couch potato before, but I did not watch my diet or do any consistent exercising. An MS diagnosis kinda scares you into making some changes! I am now watching my diet better, thanks to my wife. I am also consistently walking the dogs, running short runs, biking, golfing, tennis, etc. as much as I can. I just finished a 5k with my son and have signed up for the MS Bike 150 ride. I am grateful that MS hasn't yet significantly affected my mobility.

[laurawolf]

Hello!

My name's Laura. I've been a member of this site for a couple of months, but have been a quiet observer until now. I love all the information and positive support here!

I was 48 when I was diagnosed in May 2008 after surgeries on my hip and ankle did not improve my pain or gait. Steroids and weekly PT helped a lot, but I still walk with a limp. Don't worry, I'm not giving up.

I've never been an "athlete," but I've always been active. I especially enjoyed walking my dog and hiking around my beautiful home in Colorado. Since long walks are difficult, I started riding my bike again last summer. I'm a bit wobbly and have to watch the heat, but it's been the most exciting and liberating thing I've done since I was diagnosed!

Based on your evaluations, I recently got a Glacier Tek vest, which works great but is really bulky on me. So, today, my IZI Cooling Vest arrived, and I am psyched. It's 100 degrees here today, and I actually sat outside for about 10 minutes!

Oh, and I'm married with 2 kids -- 19 and 17. I feel fortunate to have an incredibly supportive family. Our motto is "You get what you get, and you don't throw a fit."

[Alinacg]

First post

I'm Alina, I was diagnosed with MS... about a month ago now. I was shown to this site by Kate Morse, and I think its fantastic. I'd consider myself pretty active, I dance. Mostly swing and ballroom, but I was trained in ballet. I also love biking and hiking and generally being outdoors.

I'm looking forward to being a part of this community!

[cruiserkb]

Hello all,

My name is Kevan and I am 39. I was diagnosed last June but my symptoms have been present since 1994. MS has left me totaly depandant on a manual wheelchair and I am very close to being declaired legaly blind.I have been a very active person my entire life. I am taking on a major undertaking. I am atempting to get into wheelchair racing and triatholons. I have a write up in the fitness section if you would like to follow my progress. I wan't to show that even though I am in this situation I can still compete with able bodied individuals. I would love to hear your thoughts on this endevor.

Thanks for your time
Kevan

[Tinglytim]

Very helpfully

Hi, I am Tim and I was first sort of dx with ms 20 years ago. The docs could not agree but did give me steroids which helped quite a bit. Even seeing the improvement they still did not agree. I about went broke from all the tests they did so I just decided that I would just ignore whatever it was. For all those years I thought it was all just in my head, suck it up and keep going. Finally just got a dx because this time there were lots of lesions found on my brain and spine. Did not surprise me but at 60 don't want to hear that I might not be able to go back to work. I got within a few weeks of running out of FMLA so I told the doc I wanted to o back now. We decided that if I got a power chair he would release me to go back. I run a Head Start facility that cares for 320 children. This is my idea of the perfect job. I get to play with the kids ( and act like one) but the real job is to take care of and teach the teachers. I have a staff of 40 and they are wonderful caring people. Great environment to keep my feeling young. Only problem was I can't keep my balance and walking the halls from room to room took all the energy I had. Hate being in a chair except it keeps me there. The kids were so glad to see me when I returned. I was off 2 1/2 months and almost the end of the school year, they all lift my spirits every day. At this point I wonder if I had not ignored the constant symptoms that popped up too often and gotten on meds I would be in better shape now.
This wonderful site at least gives me a place to go and see that I am not alone and I am not crazy.
Thank you Dave for giving so many people a place to go to get info or just vent. It has helped to open my eyes and face this challenge. I intend to keep working as long as I can even if it is on wheels.

[rumbalsa]

Hello Active MSERS

So I'm not sure I hit the right button. LOL I hope after I type this it ends up somewhere on the website.

I'm new to the site. Very grateful for Dave the creator and all of the helpful information. I was diagnosed 5 years ago at the age of 25. I'm an avid cyclist and traveler. One cat, one amazing partner, and an obsession with food.

[plushweasels]

Kim from Illinois

Hi, I'm Kim from the Chicago area. I don't have MS, but I do have fibromyalgia, and have severe heat intolerance because of it. I am so thankful for your reviews on cooling vests. I spent a couple of hours in the heat this weekend and had a major flare-up - fatigue, pain, feeling extremely sick. I have not seen any reviews on the fibromyalgia websites, so your site is a godsend for me!

[LivWell]

Finally!!

I knew you guys were out there somewhere! I am really happy to have found this forum!

I was diagnosed with RRMS in 2010 at age 56. My neurologist said I had probably been "managing" the MS by staying so active and being fit. I ran marathons completed 3 triathlons and addressed any strange issues as sports injuries.

After being diagnosed I went through a year of worst-case-scenario defeatist thinking before I snapped out of it (mostly). I am on Copaxone and Baclofen.

I made a decision. I will not let a disease define who I am. There's a lot more to me than MS!

[mamamoosey]

Hi!
My name is Stephanie. I was Dx in Dec 2009 after I woke up completely numb on my right side. In 3 months they were able to watch lesions form in the brain so my Dx was pretty fast and text book. I've been on Copaxone since April 2010.

I have a daughter and step daughter that are both 16 and a wonderful husband. I run a company so there is never enough time or anyway to avoid stress.

After DX I was told to basically take it easy. So I went the other direction. Never run really in my life I took up running. I went from a very slow 18 min. mile pace to a not so slow 15 mile run these days. I'm building up the milage slowly now. I'm not fast, I'm not pretty when I run, but I'm moving so I'll take that as a victory.

[ZenAcres]

Intro

Hi Everyone,

I am so happy to have found this site
My name is Melissa, I'm 45, 6 kids (yours, mine, and ours), oh and married. I'm currently serving on active duty in the Air Force but thanks to my new partner, my career is being cut short.

I was diagnosed with RRMS last year, March 22 to be exact. It has not been an easy road. I have weird facial stuff going on so I get Botox injected every 90 days. I'm not currently on any DMD's while they decide what to do. I just stopped tysabri recently. Anyway, we shall see what's in store for me next.

I really enjoyed jogging at one point, pre MS, I just need to find my way back to it. Well thank you for reading and it's nice to meet you all.

Melissa

[ZenAcres]

Inspiration

[QUOTE=Teresa26.2;691]Hi,
My name is Teresa. I was officially diagnosed with M.S. back in 2005. I sometimes read on this site. I like the idea of a place to talk to others who have M.S. and still want to exersise to the best of their ability. I had M.S. way before I had M.S. and probably have run two marathons
before diagnosis. I have now run 4 more, including the Redding marathon, here in California just a week ago. I am currently training for the
Big Sur International Marathon, run this April. I will never stop giving my best.

Alerse, I also like to swim, but haven't been in the pool for any distance in about a year.

Thanks for the site...




Teresa thank you for making me feel inspired. My name is Melissa and I'm 45, diagnosed a year ago with RRMS. It just seems like life stopped and everything became about my MS. I used to jog 4-5 days a week, I haven't put on my jogging shoes essentially since being diagnosed. Again,thank you and others for helping me see this doesn't have to be the end to doing things I enjoy.

Melissa

[SJinVT]

Both of my sisters had MS. I thought I was free and clear when I passed age 50 (my older sister had been diagnosed just before her 50th birthday). In early May of 2011, at age 57, I experienced visual disturbances that were diagnosed as optic neuritis. The cause was 'likely MS', officially 'clinically isolated symptom'. I started on Copaxone in June of 2011.
I love this website - so full of hope and vigor! I like to take day-hikes, and I used to bicycle (40 miles for the MS Bike Tour one year prior to my own diagnosis).
I haven't been a member of a bulletin board for a long time, but hope to find some good info and fun connections here. Please feel free to contact me!

[here]

Hi everyone,
I was dx RRMS in 2003. At that time I had thirteen lesions, plus, and it took about a year to recover my main walking abilities and sensation, equilibrium etc. Later I was in and out of a wheelchair (5 months) but even with that stayed really active, researching where I could take the chair, doing bike paths, trying to find ways to get into nature with it etc. I didn't want to get as isolated as I'd become with my first flare... so I really tried to keep getting out. Now, sometimes my pain gets really bad (primarily torso pain), and/or fatigue, but right now I'm generally walking ok, sometimes with a cane, sometimes without. I try to do an exercise bike as walking too far often exacerbates my issues in torso... I did copaxone from 2003 to 2010 but had a few flares during that time and am now trying Gilenya--and trying to up my exercise and also stretching for spasticity. I'm glad to find this site. Gracias.

[reddogrunning]

Hi there. My first post after failing a few times to log in correctly. I have had a couple of exaceberations in the last 3-4 years which I put down to stress(one doctor helped with that diagnosis) and overtraining. Then November 2011 I was hospitalised with severe ataxia, polyuria and neurological deficits.

The Hong Kong doctors believe I have MS. I had loads of tests including usual blood tests CT, MRI and Nerve Evoking. All came out as normal but the Doctors still said that they are convinced I Have MS. At Easter I went home to New Zealand and got some further tests performed. This time I discovered that I have ANA Nucleolar Positive blood test. Again I was told this may indicate MS but also other autoimmune diseases are possible. Therefore I am on a watching brief.

I have become increasingly paranoid about what my body is doing. I have been an avid sportsman all my life. I run 2-3 marathons a year and train to do them as well as I can. It seems the aspect of my life I am struggling the most to retain. Since my November episode I have not had usual pain sensations which has impacted on how I can perform athletically. I have been running some since my hospitalisation but before then was actually injured and I have probably not properly really recovered yet so I have been wary of pushing on due to the risk of doing permanent physical damage.

Anyway I am very happy to find this forum. Moreso since I can now post on it. I want to find the strength to continue doing my thing and I am sure this website will be of great assistance to me. Many here have already inspired me.