Active MSer? Introduce Yourself Here!

[Penguin]

Hi all, I'm very relieved to have found this website and forum. The information out there so far seems to be mostly aimed at persuading me to be less active! This site's a refreshing change.
I'm 39, just been diagnosed with CIS, scan showed one lesion and lumbar puncture showed the dreaded protein bands. I've been referred to an MS specialist (but 1st neuro helpfully didn't tell me this, or my test results...chickened out and it was left to my rather excellent GP, who clearly thought I was completely in denial ).
I live in lovely North Wales, and the start of testing 10 months ago motivated me to push my running from a fairly lazy couple of times a week to full on training for a half marathon next year. I'm lucky to work from home, for my very understanding better half who makes it possible to make running and managing my work around the afternoon crash possible.
This site has made me realise I'm not chasing the impossible, other people are out there refusing to stop moving. Cheers!

[Stella]

Hi Thea (and Pell) - lovely to meet you! Nice to see someone in my neck of the woods. If you are ever in Glasgow please give me a shout Thea. I need to renew my visa next year and also my passport so I will be up in Edinburgh twice for that to the American embassy. The beer sounds so yummy!

Stella

[pawpaw]

Welcome Thea-
You need to hook up with Stella who is also in Scotland. She posts on this forum frequently, so give her a shout.
Pell

[Thea]

I'm Thea, 32 years old, living in Edinburgh (origionally from South of England). I was diagnosed with MS last week and I came across this fantastic website whilst looking for practical tips for staying fit with MS. I am a keen open water distance swimmer and I am determined to continue doing as much training/racing as I can. I'm married (no kids) and I also enjoy a variety of adrenalin sports and have a passion for brewing and beer (mainly ales but have been known to enjoy a lager on a hot, sunny day).

[JPlat]

Wow... this is a great Blog . I found it searching for a cooling vest (which I bought) and have been receiving the e-mails ever since.

Dave, great sense of humor.

My name is Jennifer and I live in San Juan, Puerto Rico. I was Dx. in 2005, by a "witch" doctor who swore I needed to get a Spinal Tap because she insisted I HAD MS. Should have listened . Anyhow, 2 years and 2 MRI's later, there they were, all the lesions very brightly lit. I was officially diagnosed in 2007 and started on Copaxone (least side effects). After some coaxing, I spent 1 year on Tysabri, wonderful medication. I am now again on Copaxone and don't mind injecting every night.

My main problem is the heat of this Caribbean island I call home. I find that any small change in my body temperature causes my body to want a day in bed. In addition, since the humidity level here is so high, the cooling vest I purchased seem to simply soak me and not cool me. If anyone has any good ideas regarding this, they would be greatly appreciated.

[Beckydalton]

Hi from Arizona

I was diagnosed in Mar of 2006. I have been on copaxone and betasteron and am currently on Tysabri. Even with all these drugs every MRI shows more lesions. I went from RRMS to SPMS last year. My left leg has gotten very weak and my left knee and ankle have become very unstable, this has affected my walking. I use a cane, a wheelchair when I'm going to the mall or long distances. I just was fitted with a ankle and foot brace which is great, it has improved my walking a tad and decreased the pain from dragging my left foot. I take PT once a week and swim in the pool. I was unable to work due to fatigue in 2007. I have a wonderful husband and great children and grandchildren which live close to me and I love spending as much time as possible with them.

[Stella]

Hi from sunny Albuquerque.
My name is Jeff Scott. I was diagnosed with M.S. in March of 2011 @ 49 yrs old. MRI showed six lesions with one active. Had an LP done and sure enough it was positive too. As far as staying active I work as a auto service advisor Monday thru Friday 11 hours a day(Thats a long work day). Then on Fridays at 6pm the fun begins. I become "Fat Paul". I pick up my Les Paul & plug it into a Fender tube amp and play blues at some of the coolest bars, street partys, and blues festivals in New Mexico. I play two or three gigs per month (kinda slowing down). I am taking Copaxone to slow down the progress of this crap. Well I guess thats about all the details about me that I will bore you with. Thanks Jeff (Fat Paul) Scott

Hi Mike and Jeff,

welcome to the forum and thanks for the stories. At least I don't feel all alone. Wow Jeff so you were 49 when you got diagnosed. Just when we thought too late and then boom. I am 47 and around the same time you got diagnosed as well. I chose Rebif. I think it's so cool about the guitars as well. I have a Fender acoustic myself.

Stella

[Fit Paul]

Hi from sunny Albuquerque.
My name is Jeff Scott. I was diagnosed with M.S. in March of 2011 @ 49 yrs old. MRI showed six lesions with one active. Had an LP done and sure enough it was positive too. As far as staying active I work as a auto service advisor Monday thru Friday 11 hours a day(Thats a long work day). Then on Fridays at 6pm the fun begins. I become "Fat Paul". I pick up my Les Paul & plug it into a Fender tube amp and play blues at some of the coolest bars, street partys, and blues festivals in New Mexico. I play two or three gigs per month (kinda slowing down). I am taking Copaxone to slow down the progress of this crap. Well I guess thats about all the details about me that I will bore you with. Thanks Jeff (Fat Paul) Scott

[mstile]

Glad to find this site

Hi all, so happy I found this site, it makes me want to write something even longer (guess I did write a little longer )to share and relate to all the great stories and trials of everyone in this community.

My diagnosis was 4 years ago, Aug 7, 2007. Yep, I remember the day, I was on vacation, started 5 days of steroid infusion the next day. Went home with bags of drug paraphernalia - there were 4 choices at the time, I chose Rebif, just on the slight observation that it might be most effective, regardless of side effects. Just depends how you read the studies I guess, and have since learned. But it works so far, I don't like it, but switching might just be even more negative...

I first noticed things going wrong early in January of that year. I have been playing soccer my whole life, and was playing two times a week indoors at the time (winter in new england ). Things started to go wrong, a whole slew of things I believed to be separate all came together on my journey to a diagnosis.

I started a blog, What's wrong with me?, on mstile.blogspot.com, it may still be there. Little did I know that my balance/coordination problems, numbness in legs, face, chest, urinary problems, fatigue, stiffness... were all tied back into MS. I think I was tested for everything else in the book during that time. But, MRI, and spinal tap (two, first by my Neuro didn't work), finally completed the picture.

I think I may have let another relapse go by if I hadn't been playing soccer. Nothing manifested during every day, just a bit of imbalance at night I may not have noticed. It was the impact on my soccer game that had me doggedly pursuing some sort of problem. I couldn't run, turn, jump without falling down, and I'd find my eyesight blurring, spinning. It was terrible, I would sub out and sit on the sideline with my head in my arms, fighting tears.

The steroids did their job though, and I was back to about 95%. Same with my 2nd formal relapse two years ago, another loss of about 5% or maybe I'm being optimistic, but I prefer that outlook...

I didn't mean to write so much, was going to save it for some more formal post. But in any case, I'm glad to be part of the community, seems like a good fit for me!

PS. I'm planning to ride a Bike MS event this summer with my wife, we've been trying to train together and have really been enjoying the bike, it's much easier on my legs than running.

Thanks for reading,
-mike

[Stella]

Hi Joey,

I just want to say welcome to the forum and how inspirational your story is. I was wondering if you are still taking your DMD since you found out that exercise helps. I have only recently been diagnosed and am trying to find out as much information as I can before I go to the specialist on Tuesday.

Stella

P.S. I have noticed so many amazing people in this site and its bittersweet that most are in their best shape of their lives physically since being diagnosed because of their dedication to train and push themselves. I find all this so admirable and so uplifting.

[Roo]

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.

Joey

[Stella]

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

[banshee]

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.

[Madeleinemom]

Nice to meet you, Ruby!

[rubyming]

Hello!

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