Active MSer? Introduce Yourself Here!

[The MS Wire]

It's www.themswire.com. And, if you go there you'll find that my name is actually Ed.

[ActiveMSers]

Belinda, why don't you start a travel thread in our General forum? If it starts to get a good bit of traction, I may sticky it or possibly create a new subforum, but since other MS forums are plagued by subforums of subforums, I'd rather play the wait-and-see game.

To become a full-fledged member of ActiveMSers, join at www.ActiveMSers.org. Joining on the main website is separate from registering on the forum. Once you join, you'll get an instant welcome e-mail with the Members Only password.

[Hamadryad]

I'm Heather. RRMS is the current diagnosis. Doing my daily Copaxone meds & walking, walking, walking so I can keep walking. Everytime I get stressed out about MS stuff I go for a walk even if it is just around the house on my bad days. I've been stalking the board & FB page for awhile but I am really looking to connect with some MS folk who have a different mentality to the ones I know in real life--I've been getting encouragement to take it easy & not try to work so hard trying to deal with the fatigue & heat issues I'm having. I want to keep being a scout leader even if I have to do the easier trails only & pick which campgrounds I do rather than give it all up.

Woke up in September of 2015 & realized I was legally blind in one eye (yeah optic neuritis!) with no real clue why--off to the ER I went.
ER doc wouldn't order an MRI & tried to send me home but an awesome ophthalmologist came in on his day off & got me to transfer to a different ER so I could have an MRI. They did tell me I most likely had MS (put it on my paperwork even, which I learned later wasn't really what they should have done). Within a week, I had a tentative diagnosis of MS from a neurologist (I had been going to the doc off & on for a host of mild & weird symptoms for 2 years!!!) pending a few more tests to rule other stuff. Trying to explain to the intern working with the neurologist how I didn't really put everything together (including symptoms I described as "falling down days") was a hoot.

My last MRI was good enough that I get to go to yearly visits to the neurologist unless something new pops up. But I still need a bit of encouragement to keep moving. . .

[Marinadca]

Welcome Heather I am sorry you are joining the MS club but if you are then joining Active MSers is the way to go. People here have given me so much hope and positivity.

Walking is so important, good on you for doing it. I go to the gym to walk around the track (way too hot right now for me) twice a week and it is HARD.

[cks]

okay to join?

Hi, my name is Connie. I have been lurking here, anonymously, since earlier this year (Dave, I emailed you about the Millennial Forearm Crutches; not that I would expect you to remember). They are my "magic sticks" for now. Looking into getting the Side Stix (have questions)

I am not officially diagnosed. It looks like it is heading that way. Although I am told it is more NMO than MS. appears to be attacking my spine and eyes; not so much my brain. I am negative for the NMO antibody; but I hear "does not necessarily rule out. . . ." a lot these days.

My question; is it okay to join here? My husband and I are out of denial, and focusing on long-term. Here appears to be a place of "forward" and finding the right tools for what you want to do; and living; without being "fake-happy" if that makes any sense.

Here are a couple of links if it helps: (first one; I was invited to be a featured storyteller; the theme was "Dazed and Confused: Rocked and Rolling; the second: teaching landscape painting, this was the first time out with the forearm crutches.

For the Love of Paper and What Happened:
https://medium.com/@crookedlittleflo...534#.g27917sqg

Landscape and Memory:
https://medium.com/@crookedlittleflo...796#.ucecy2v26

My husband and I love traveling, hiking, camping, etc. and wish to find our way through; and we realize we need some help. And, find ways to have separateness. This past year, he has been so much of a caregiver. Looking for separate ways to find that support and resources. So that our time together is once again, time together. If that make any sense.

Anyway, thanks, Connie

[ActiveMSers]

Connie, welcome! We have many members who do not have MS, and we would love to have you join our ranks. And yes I remember your e-mail.

Hope the docs eventually figure things out. In any event, our friendly door is always open.

[cks]

Thank you!

Thanks Dave, I appreciate it! I hope so too!

[Stewart]

greetings

Hi all, I'm Stewart. 53, recently diagnosed with ms, live in Wollongong Australia. When first learning ms was possibility for me, I started looking around to see how to stay active - and found here. I have minimum impact from ms and starting interferon in a week, so hoping ms impact stays as is for me and very mild. Basically I'm lucky all around - mild impact and live in Australia ! Talking active - I'm starting a one year plan today, which I'll measure by bodyfat %. I'm currently on 37% want to reduce to 20 something. (29.99 is good). I'll focus on - rowing machine, walking, weights and diet. The 37 is mostly on my belly - wish me luck. I'll stay tuned in here and add/involve in forums as I can. All the best - stay active all.

[ActiveMSers]

Stewart, welcome! I have not been to the Gong, but I hope to get there one day. I have a dear friend who lives south in Canberra (and Sydney is on my list).

You can totally do this. Just slow and steady. Patience. I hope all of us will help in the motivation arena.

Cheers,

[Jule]

Active MSer

Hi there. My name is Jule. I am 55 years old and I have Secondary progressive MS. I was diagnosed in 2004 with relapse remitting.

I currently do crossfit and have been doing it for 4 years. I love the energy it gives back. I cannot explain what that energy is, all I know it is the complete opposite of chronic fatigue that I experience. I have to be very careful tho not to over do it. I have been wanting to connect with others who are also doing crossfit and how they are doing.

I look forward to more discussion.

[ActiveMSers]

Jule, welcome! And I am revising my welcome policy. It kills me not to chat with new folks on this thread (in theory to keep it from getting too big), so I've decided that's silly. Let's blow this thing up.

Crossfit!? Love it! We have some CFers here. All great folks. Glad you joined us.

[JRun83]

Why haven't I found this site sooner? My name is Joe and I was diagnosed in January 2007 at age 23 after going pretty much legally blind. I've been on Copaxone for 10 years now and besides a few random exacerbations, I've been able to keep it together and run my Ragnar Ultra relays without a hitch..

[ActiveMSers]

Joe, where the hell have you been? 10 years you've had this disease and you've never visited?! Oh, we forgive you. Especially if you fill us in on your epic adventures. For folks wondering what is a Ragnar, it's this.

What is Ragnar?

Here’s what we do: long distance, team, overnight running relays that take place in the most breathtaking places in the world. Teams come together to conquer a course over two days and one night, and push their limits, on little amounts of sleep, with friends and a community of runners by their side.

Your Ragnar experience is as competitive as you make it. Rally your team and battle the other teams in your division for the top ranking, or simply make it your goal to cross the finish line together! Ragnar is about coming together and accomplishing something we could never do alone. From an elite runner to the generally active individual, Ragnar is the perfect race for anyone.

Conquer 200-ish miles of road running with 12 friends and 2 vans during a Ragnar Relay, or camp with 8 friends and conquer a set of gritty trail running loops at a Ragnar Trail. Find out more: https://www.runragnar.com/ragnar

[TinaP303]

Hi everyone,

I'm, Tina. 57 yrs old, married my high school sweetheart when we were young & stubborn. Still happy & stubborn with 4 kids & 9 grandkids.
After about 15 years of "sinus infections" and "toothaches" I was sent to see the PA at a neurologist's office. She said "Trigeminal Neuralgia" - I said "translation please". She did. MRI was ordered to check out that pesky trigeminal nerve.
A week later I get called into the neurologist office to see the doc. He said "MS" - I said "whatthejunk?".
After picking myself off the floor, I had a long chat with the Sensei at the karate dojo where my 2 oldest grandkids went. Her calm phrase "We'll figure this out together" started my soul's recovery & I started training that Monday.
5 1/2 years later - that was the best decision I ever made. I've got another family now, with more support than I could have dreamed of getting.

[ActiveMSers]

Tina! It's fantastic to meet you. Although you might want to think about cleaning up your language (re: whatthejunk). That crosses the line. Granted, the line between prude and good two-shoes, but still....

Oh, I joke. Especially because it sounds like you are a skilled martial artist who could take me down with one chop! Welcome.