Active MSer? Introduce Yourself Here!

[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.

[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

[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

[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

[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.

[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.

[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).

[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

[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

[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!

[magnul17]

Hello

Hi, my name is Leanne. I'm from Clarkston, MI. I was diagnosed in 2010 with RRMS. It was quite a shock for me and was, of course, the worst case scenario in my book. It took 4 MRI's and a lumbar puncture to come to this conclusion.

I've been on Copaxone ever since. Thankfully, on my therapy I've gotten feeling back in my hands, feet and my balance is back to normal. I'm not a fan of injecting, but can proudly say that I've only missed one injection in a year of therapy. I don't plan on missing anymore. The guilt I had in missing that one injection really bothered me. I have a good excuse. I didn't make it home from a trip in time and had run out of meds.

I'm 33, divorced and currently single. I am the momma of two cats and no kids. I'm going to be honest and say that the thing that bothers me the most about this disease is wondering if I'm going to find someone who will be able to accept me AND my newly acquired disease.

I come from a family that has two pharmacists so believe me, I get enough counseling regarding what I should be doing. I'm looking forward to interacting with you all and making new friends who know how hard it is not knowing the future.

[ActiveMSers]

Penguin, Leanne, welcome! It's so nice to meet the both of you. This group is super brilliant, super positive, and super, well, just super. Except for that one guy, who is a jerk. Oh, I kid.

Looking forward to hearing more of your stories and successes....

[Penguin]

You mean to say there's only one 'that guy'? Thought this was a forum...;p
Leanne, having done the divorce thing, around the same age, I can honestly say that I think everyone thinks that way...I was mistakenly diagnosed as menopausal at the time, thought no-one would ever look twice at me again. Um, I may have even used it as an attempt to put him off, when I met my man. Actually, I definitely did, when he asked me for a date (rare in Brits to ask!). I don't know what the moral of this tale is, maybe it's that good eggs may be uncommon, but they do exist.

[Madeleinemom]

Welcome, Penguin and Leanne!

[dr_boost]

Hello to all. My name is Nate, I'm 34 from a little south of Pittsburgh PA, and I was diagnosed last year with RRMS.

I probably have too many hobbies (haha), but I like to stay active both physically and mentally. Problem is, out of all of my activities, I am the only MSer, and that makes it hard to talk with others about how things may affect me, and how to work around them.

So after finding this site, I feel thankful to see other people like me living their lives to the fullest, and know that there is much I can learn here.