Active MSer? Introduce Yourself Here!

[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]

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,

[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.

[cks]

Thank you!

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

[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]

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

[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.

[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. . .

[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.

[The MS Wire]

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

[Belinda]

Thanks, Anchorman. My husband and I traveled to Bermuda on a cruise out of Baltimore a couple of years ago. I really enjoyed it. Since my diagnosis in 2008, we've also traveled to Alaska, India, and Brazil.

I thought I saw some special interest groups on this site previously, but I might be mistaken. Nonetheless, I did not see one for traveling.

I tried to click on the link for your blog without success. Would you please provide it, again?

[The MS Wire]

Traveling

Hi Belinda,

A travel section on the forums sounds like a great idea. I'm pretty new here, as well, so I don't know if this has been tried before, but I'm sure someone here will chime in.

While I was working, I traveled all over the world for business. I stopped international business travel when I started using a scooter. However, I've ridden my scooter as a tourist in about fifteen countries and Alaska, since then, mostly in connection with cruises.

My wife and I won't be traveling for a while, because we have two young grand kids to keep us occupied. But, we have a Bermuda cruise booked for next June and I can post about that when we're on it. Meanwhile, I'll certainly chime in if I think that I can add to any posts that are written here that relate to places I've been.

[Belinda]

Great to read your post, Anchorman. I just retired after working in DC for years.

It's great to see someone interested in travel. Maybe we can start a special travel group on this site?

[Belinda]

Hi! I'd like to become a member.

Hi,all! My name is Belinda. I live in Fredericksburg, VA. I was diagnosed with RR MS in January 2008. I recently retired (April 2016), and I LOVE to travel to see new things. I also love history. I would love to find like-minded travelers with MS.

I lead the only MS Support Group in this area, and I LOVE this site. Thanks, Dave, for starting such an upbeat and informative site for those of us who prefer to keep living actively with MS.

How do I become a member of ActiveMSers? I created a user name and password. However, the password is not working for me in the "Members, only" section.

[girl1dir]

New to the site, to ABQ, and semi-new to RRMS

Hey all!

I am Chele, nearly 40 years old (when did that happen?), and still very happily married to the best guy on the planet after nearly 18 years. Annie is our fur kid, she is a 2 year old border collie/ lab mix.

I had tingling / numbness in my face in October 2014. Lasted a week or so before I went to urgent care. CAT scan showed nothing. They did a bunch of Neuro tests, I passed them all. Sent me off as a "numbness" diagnosis and with a steroid pack and anti-virals because they thought it was bells palsy. I was not happy with the doctor and brushing me off like, "eh, numbness happens." I knew then something was wrong, I had no idea what, but I figured it was curable.

June 2015 my vision was disturbed. Then the tingling came back. I went to a primary care doctor after a week. He sent me to an ophthalmologist in case I had a detached retina. Nope. I pushed to see a neurologist on my primary's recommendation. None available that night. Went to urgent care in the morning, an hour before they opened. Was able to talk to the right people before they even opened and was ushered in the second after they opened. Bypassing check in and everything. It was 8am. Had my MRI at 11. Diagnosis of ocular neuritis and possible MS by 1pm. 1 gram steroids started by 2pm and they were trying to find me a room in the hospital for the next three days.

I reacted well to treatment. I was released three days later. I saw the neurologist MS specialist 6 days later. Told my story again. Then he finally read the MRI. Official diagnosis of RRMS came the morning of July 2, 2015.

And here I am. Trying to understand what life will be like and realizing every day is different and unreliable, but I'm still moving forward making plans. Plans which included a big move, and lots of change, but of which I can control.

I'm "mostly normal" most days of the week. Which is great! When the invisible symptoms of MS are active, I have a hard time being me.

The heat is starting to be a problem for me and I am exercising less... which is NOT OK. There was a recommendation on MyMSTeam.com that recommended this site for a great review of cooling vests. That was a great recommendation and here I am!


If you're in ABQ -- let's be local IRL friends! I need new people. When I'm not here, I'm either working as a Project Manager, working in the garage at home, or playing at the Drag Strip.


Thanks for having me! =)
girl1dir