Active MSer? Introduce Yourself Here!

[5telios]

Stelios here, 42 years old, father of two (6 and 4 this year (2015)), DX in 2002. Not as active as before the girls were born, but I am trying to do something about that.

[Cvfactor]

I just noticed

this thread about introducing yourself. My name is Mark and am an engineer in the auto industry.

My first experience was an acute attack back in 2009 that was believed to be a disease related to MS called acute disseminated encephalomyelitis aka ADEM. It turns out about 30% of people with this disease convert to MS which appears to be my case.

I've been on many MS sites but feel this is the most well balanced.

Take care all,

Mark

[victorwee]

Hello

My name is Kevin and I am from Vancouver Canada. I was diagnosed with SPMS in 2005. My GF always talked about this site but I never really checked it out until now. After reading thru a few things I am impressed how she took an interest in my disease and told me about this site. I had to recently stop working as fatigue and leg spasticity was too much. I tried the Marshall Protocol for 18 months but I can't stay out of the sun, other than that I have never taken any other drugs. Looking forward to reading thru the forums.

[Mouse]

It's all me, me, me...

Hello!
Noob from UK, here. I’m a 39 and-a-half year old scientist freshly diagnosed following optic neuritis and now awaiting MRI results. It's no surprise as I had my first episode in 2005 with a couple of lesions (pons & spine at C5/6), and MS is on both sides of my family. Very happy to find this site, as I’m a mountain biker who has recently run (with my legs & no wheels...what’s that about?) 2 half marathons in the first week of March to raise £3K for the wonderful Hospice who looked after my amazing Mum before she died in September 2014.
Now, I would like to run a marathon, possibly in 2016, but I’m having trouble convincing my GP/Neuro/family that it would be a good idea. I reckon much of the literature on this site may just swing it for me....
Thanks!

[myoak]

Hello, I am a caregiver to my wife who was diagnosed with MS in the 1980’s. I have reviewed scientific literature related to MS for my wife’s benefit for the last 30 years; it has become a full time hobby. I’m thankful for the opportunity to learn and share on this site.

[Ellie]

Hello

Good Evening! My name is Ellie. I was diagnosed with Remitting/Relapsing MS August 2014. It was the worse summer of my life. I am married with with boy girl twins. At the time I was training for my first marathon. I must say MS thru a big old wrench in that. I tried to do the marathon anyway. I did not finish. I had to stop be the medical tent to get my foot taped up so I would not trip over it. I have foot drop I have since got an AFO. I also broke my first on training for my next marathon. I love running and will continue until I can not run at all. I signed up for Bike MS and will be doing my first triathlon in the fall.

[shanex1975]

This is my intro.

My name is Shane, I live in Washington and I have RRMS. I was in a bad car accident on 7/1/06 that triggered my initial symptoms of blurry vision and vertigo and muscle cramping. I was diagnosed as being at the early stages of MS on 2/7/07, started a DMD very soon after, and my disease has stayed about the same. I have been very active my entire life and continue to be, despite my MS. I will be 40 years old on 7/8/15. I also suffered a traumatic brain injury on 7/14/86 and was comatose for 2-1/2 months. While I was in the coma, the doctors told my parents I would never walk again. I was out of my wheelchair and back to walking about a month after I woke up, and back on my bicycle a couple of months after that. I participate in Walk MS every April and got back on my bicycle last year and did Bike MS. From now on, I will be doing Walk MS and Bike MS every year. I have recently gotten back into hiking as well. I am pretty sure I will never be able to climb to the summit of Mt. Rainier (14,411'), but this year I am hiking with a couple of buddies up to Camp Muir (base camp at 10,188'). My ultimate hiking goal is to complete a Mt. Everest Base Camp Trek. I am a dishwasher at Trapper's Sushi in Puyallup, WA, and my job keeps me very active. At work, they call me Hip-Hop, because I just don't stop, in reference to the old tune by Sugar Hill Gang. I am very grateful to have found this website for people like myself, who have multiple sclerosis and are active, not letting the disease dictate our lives. Thank you!

[DefyMS]

Hi there! Newbie who's been reading your excellent emails for a while. I was diagnosed with MS in December last year, so very new to it. Just started Gilenya this week, so far so good.

I live in Melbourne, Australia.

[Cay Borduin]

Hi Fellow MSers!

I was diagnosed (ish) in 1992, same year I had my first baby. Was symptom free for six years, then the exacerbations started. Been on Avonex since '98, but I'm secondary progressive now (at least we think.) I lived with ms for so many years while being a very active runner and Jazzerciser, but now not so much. My kids are now grown and I do very fun work (costume and graphic design) and have the best husband ever. Rather wish I didn't have ms, but you know the feeling

[cl3me]

Hello from Winnipeg Canada

Figure time to introduce myself. Dx RRMS after a severe bout of optic neuritis in Sep 2003 that left me blind in my left eye. Been stable since started Copaxone 3yrs ago. I love horses and am lucky to have a retired racehorse, did some dressage competitions and even have my para classification, but mainly trail riding now. I also love cycling and did the local MS Bike Tour last summer. Just recently named as a Community Representative with the MS Society of Canada where I will be participating in the Research Proposal Grant Review process. Very excited about that!

Cheers
Karen in "winterpeg"

[GerlindeP]

Hello from California

My name is Gerlinde. I'm German, but live since 1990 in California, close to San Diego. I don't have MS - my son does. He was diagnosed at the age of 24. He went from a very active outdoorsy person to a not being able to function couch potato over the course of 12 years. He had a very rough ride with the disease from the beginning. He became disabled very quickly. But this did not stop him from trying what ever he could to keep his independence. He was on Rebif, then Avonex since he could not deal with the side effects. After that came six years of Tysabri. But nothing stopped his decline. By the end of 2013 his Neuro took him off Tysabri since he tested JVC positive. He put him on Tecfidera, which resulted in a major exacerbation with disastrous consequences. My son lost his independence and had to move back home. It was heartbreaking to see him in that condition, he lost his will to live. To make a long story short, I found help for him. He had HSCT, performed by Dr. Richard Burt in Chicago. He is now 3.5 month past his transplant date and is doing great. I wrote a blog about his journey if you would like to know more about his treatment: http://gpecht.blogspot.com/

[loshakova]

Hello

Hello, my name is Heidi. I don't have MS, but I joined with Dave's blessing. Thank you, Dave!

I was diagnosed with Late Stage (CNS) Lyme Disease in January 2010 after 8 years of serious illness. Before that, I was very active -- ran 3 miles a day, walked to work and back, and walked or hiked 20-30 miles on the weekends to relax. I'm trying to stay as active as possible; I actually found this site while searching for lightweight elbow crutches. Thanks to whoever mentioned the Walk-Easy brand -- Fettermans and Sidestix are outside my budget right now, but the Walk-Easy 495s I got are eons better than my previous elbow crutches! I bought them from Fetterman after having a long conversation with Brian, one of their sales reps, about the ins and outs of elbow crutches. After reading your equipment reviews, and at Brian's suggestion, I also got a pair of Tornado tips. I just got the adjustment checked out by my PT this week, and took them for their first spin this afternoon -- ended up walking twice as far as I'd planned because they were so easy and comfortable to use. It's so great to be able to see directly in front of me as I walk again, instead of having to peer around my rollator seat!

For other exercise, which I do every other day, I do situps, wall push-ups, leg lifts, an isometric exercise to help strengthen my back muscles, and sometimes seated T'ai Chi. I'd be very interested to know any exercises regular elbow crutch users have done to strengthen their shoulders and upper back.

As a sculptor and biologist who has taught in both areas, my special interests include art, biology, and teaching. Also food. I love to cook. And knitting. And canaries (I have two). I'm looking forward to meeting you!

[JOHNVAL59]

Sclerosifide

Hello my name is John. I've been Sclerosifide since 4/2005. My treatments started with ReBiff. The disease started progressing rapidly in the last half of 2006. January 2007 woke up one morning and I was almost an inviolate. My neurologist started me on Novantron (chemo-therapy) took 4 treatments on every three months. This treatment got me back on my feet and I could walk well with a cane. I started Tysabri treatments Dec. 2007 and I was just told by my doctor that having taken this drug so long I now had a 1 in 10 chance of developing the PML brain virus. It's pretty much a death sentence. So Oct 2014 was my last treatment.
Ok so that is the MS story. I have never surrendered to this disease. Jesus Christ is my Lord and Savior. I have a close relationship with him and try to help as many other people to come to know him as well as I do. By his grace and mercy I wake up everyday a happy person. My wife and children have been wonderful caregivers. My walking is limited, so I use my wheelchair the majority to the time. It is very good exercise. I am an IT Tech and my company has allowed me to work from home since 2007.

[teena marie]

Welcome to you both.

What part of Canada? I'm from Montreal.

Teena Marie

[Wendylea]

Hello

Hi, just found this site. I was diagnosed with R.R. 5 years ago. I am not on any drugs. We recently moved to another province (in Canada) and I have been sick so unable to exercise. I need to get active as I know how important it is. Glad to have found this site.