Active MSer? Introduce Yourself Here!

[celia]

I find that exercising in a "pool of cold" makes a big difference: ice packs, fans, an open window in the winter, etc. All of a sudden, you can move again.
I don't tell people I have MS, usually. I say things like - damaged nerves (which are also there from a lifetime of trying risky things), and clinical heat sensitivity. If the MS thing comes out, I say - there's at least 2 dozen varieties (so they don't assume there must be some complete physical breakdown). And yes, there are bad days and good days - but you don't need MS to have that!
Welcome to the "MS-Line." Lots of good advice here.

[Michelle]

Hi everybody,

I just signed up today, although I've been diagnosed for a couple/few years now. I was hiking around Mt. Rainier and with about 2-3 miles to the car, I mentioned to my hiking partner that my toes on my left foot were numb. We laughed. Her feet were sore & numb too. We had just hiked a few miles down a steep slope. I figured my boot laces were tied wrong. Didn't go away. I've heard of this happening with other hikers, so I didn't worry about it. Bought new boots, actually, so something good came out of it!

Numb toes eventually turned into tingly feet, then tingly calves. When I walked, that traveled all the way up my legs (now both legs). Bottoms of feet felt like I was walking on stones all the time. After a couple of months, when I walked my legs became very weak. I couldn't go from my car to my desk at work without stopping for breaks. Stairs were out of the question. My doctor sent me to a neurologist who did every test under the sun and eventually found the spinal lesion (along with many brain lesions) and diagnosed me. I went to MS clinic in Seattle for 2nd opinion, which was confirmed. Eventually this all got better. This diagnosis also explained the weird vertigo/dizziness I had for 6 weeks earlier that summer that came and went without explanation. So, 2 relapses in 3 months. Yikes!

Knock on wood, no more relapses (I was put on copaxone), although I've had a lot of cognitive issues. I am a paralegal and this is hugely impacting my job. Seems like a steady decline.

But, I soldier on. I also have severe facet joint arthritis in my low back so my activity lately has decreased & I'm looking for my motivation to push through! Hiking is actually better for my back than walking around the neighborhood. I used to run, but that's out of the question now. Thinking about taking up biking in the spring.

Anyway, that's my story!

[ActiveMSers]

Michelle, a big welcome from the gang here at ActiveMSers. I've been traveling, or I would've piped up sooner. You live in a beautiful area. The Hoh Rainforest is mind blowing! Keep hitting that trail.

[mchazelle@icloud.com]

:I’m a new member, And I love this site.
I was diognosed in 2013 with PPMS

[ActiveMSers]

Michael, welcome! Dang glad you found us. This site has a lot of powerful energy.

[Drillerdou]

Hi everyone,
Been a lurker for some time. Diagnosed rrms just over a year ago. Happily married father of 2 teenagers. I've been working 70 hours a week in utility const. for 20 years, and always been an outdoorsman (hunter, camper, canoer, dirt biker). Was always into strength training. Since the dx I quit riding dirtbike-felt too risky with vision/ balance issues so I bought anatv to chase my boys with. Double vision, uncontrollable weight loss and muscle weakness (especially legs) has made my lifestyle difficult. The will to keep pushing among the members here has helped me when I'm feeling down. Hopefully I can do the same for someone else.
Thanks Dave,
Doug

[ActiveMSers]

Doug, a bit of a tardy welcome, but a welcome nonetheless! Many of us have been right where you are. Hope you find some good tips and tricks here, and glad to see you are lurking no more. Perhaps others will follow your example. Maybe?

[heather510]

Hi all, I'm Heather and was diagnosed with MS this year at the age of 45 after a bout of optic neuritis. I live in the SF Bay Area and am a librarian, married with 1 son. I don't *think* I've gone undiagnosed for a long time although I can go back maybe a year and remember that my left foot has been falling asleep probably more than normal but I always just assumed I had tied my shoe too tightly or whatever. Other than that I don't have a ton of symptoms although since being diagnosed I have been evaluating pretty much every bodily sensation wondering whether it might be MS which has been stressful! I started on Rituxan immediately and hope that it will be effective for me.

I'm a pretty active person and have been doing weight training weekly for about 5 years which I think is really beneficial for me. I'm in the process of adding another weekly training session which will be more cardio focused since I know that is an area that I'm lacking in. Since diagnosis I've also been religious about getting my 10K steps in and I do one of those 7-minute workouts when I have a chance.

Drillerdou, I was interested in your "uncontrollable weight loss" remark. I've always been a thin person but 2.5 years ago I lost 10+ pounds and have been completely unable to gain them back despite trying really really hard! I'm 5'5" and am now 105 lbs. I have to think it is MS-related although all the news articles talk about how being overweight is bad for MS, excess body fat is bad for MS, etc. etc. etc. Being too thin in MS isn't something I have been able to find much information about. I have heard that sometimes MS can make your thyroid hormones go out of whack so I was wondering if that might have anything to do with it but I haven't had my levels tested at this point. The drs aren't really interested in my weight and honestly this is not too far off my lifetime average so maybe I should just stop obsessing. Easier said than done!

Anyway, hi to all and I'm glad to join you!

[Drillerdou]

Welcome, we probably shouldn't be too worried about the weight loss. I know many who are jealous. I feel that most of my loss was muscle mass, I was an avid weightlifter, but only have a fraction of my strength left. I have levelled out about 160 which is my lightest since pre adolescence. I keep on moving when I can and if you feel the same way than you've come to the right place.
Doug

[bski864]

Ahoy there!

I thought I actually had an account here, but lo and behold...I was so wrong. So I just got this fancy account today, even though I've been stalking ActiveMSers and Dave for years. Woops.

I'm Beth. I've had RRMS for 16 years now. Got diagnosed at 17 right before senior year (THAT was a "fun" year, oh man). I guess, in hindsight, it ended up being a good thing, because it made me look at myself with a more critical eye, and got me up and more active. Like...I run now...regularly. If you'd told 17yr old me that I'd be running 3-4 days a week, she'd have laughed in your face.

I started on Rebif...moved on to Tysabri after I became immune to Rebif...stayed on Tysabri for about 7 or 8 years (astounding)...moved to Georgia which meant a new neuro...bloodwork came back sliiiiiiiiiiiightly positive for those JCV antibodies, and I decided I don't like Russian roulette...went on Copaxone (it failed me)...been on Gilenya for about 2 years now.

I am super bad at intros, and a giant weirdo nerd. So...hello and nice to meet ya!