Active MSer? Introduce Yourself Here!

[ActiveMSers]

Van! Glad you found us, and many of us have been right where you are. Starting meds can be a bit stressful, but this recently published piece by the Cleveland Clinic might put the issue into better perspective.

For most people, it’s better to take drugs for multiple sclerosis (MS) early rather than let the disease run its course, according to new treatment guidelines from the American Academy of Neurology.

https://health.clevelandclinic.org/d...ple-sclerosis/

Sorry you are joining us on this journey, but you won't meet a better bunch of MS misfits, period. Look forward to seeing you here.

[AMFADVENTURES]

Van, well, at least you've managed to find the best MS website on the internet. Dave has put together a reasonably comprehensive set of resources for learning about and coping with this condition which is frequently supplemented with references to late breaking news on the MS front, as well as a community of MSers actively engaged in life in spite of this disease. So, welcome, and I also look forward to seeing you around here!

[VanR]

Van! Glad you found us, and many of us have been right where you are. Starting meds can be a bit stressful, but this recently published piece by the Cleveland Clinic might put the issue into better perspective.



Sorry you are joining us on this journey, but you won't meet a better bunch of MS misfits, period. Look forward to seeing you here.

Thank you so much! Met with neuro last week, and still not sure what meds to get on. I was JCV positive, so Tysabri is out. That was my first choice! He offered Ocrevus, but that one freaks me out, so I refused it.

Testing for TB and liver function now to see if I can do Aubagio. Feeling a lot better and finding that a bit of Tequila takes all my symptoms away! I might have found my "medicine". 😝😂

[viriditasJay]

new member

I've had ms for 47 years, diagnosed in '96. Started Ocrevus in January, and have already had some recovery of motions long lost. I've been a sculptor from '74, so very active. Then began designing and building gardens as art in '96, before my diagnosis, but because of arising physical limitations. Went on to inventing, and was granted some patents. Really just want to share that if Ovrevus works for me, it's likely beneficial to others. Best, Jay

[Drexel]

Hello from Portland, OR

Hey all,

I have rrms. I'm not a great writer, but hopefully my experience will help someone else, or make them feel a little less alone. Feel free to reach out to me if you want to chat or talk. I'm a married male, have a 17-y-o daughter, and live in Portland, OR.

Until a year and a half ago I had always been a healthy eater, work-out, competitive sports as an adult, super coordinated, racquetball, good physique, etc... You may know the story intimately.

8 years ago my chest was numb for months, with shocks down my neck/spine when I bent my head down. This did not limit my activities. The doctor MRI'd me and said it may happen again, may just go away forever. He never told me what it was or could be. I had some back issues and assumed it was related to that. I didn't know it was ms, and was not limited in any functionality. Eventually everything was normal again.

Three years ago I started having some balance issues. Nothing major, just suddenly lost my super balance and agility I had worked so hard and long on. I thought it was strange that it happened suddenly, but maybe it was part of getting older, maybe it was the ms.

... (dom, dom, dom)... until a year and a half ago when I was suddenly and inexplicably unable to walk and it felt as if something was squeezing my abdominals. I would stumble as if drunk. This slowly got better. I can walk, but sometimes it's difficult. My left abdominals have "the hug." My left leg is always numb.

Anyway, It took a year (ridiculously long time to be visiting a neurologist regularly and not be diagnosed) for me to be diagnosed. This was a direct result of a discussion with my cousin (who has CIS and works in neuromicrobiology). She shared her symptoms with me and let me know I need to advocate for myself. I spoke with my neurologist, who said "if you want the diagnosis and want to go on copaxone, okay."

Referred to the MS clinic where they suggested I consider infusion therapy. I have medium titer, so they said tysabri would only be for a couple of years, then we would have to figure something else out. A second opinion seemed like a good idea.

Second opinion was OHSU neurology. I asked about infusion therapy. The ms neurologist told me it would be "unconscionable" to start me on such an aggressive course of therapy considering my symptoms and time between exacerbations.

I decided to stay on copaxone, per their advice.

My next set of mri's (six months later) showed additional spinal lesions and my symptoms slightly worsened. I guess the aggressive therapy really would have been better.

I have started Ocrevus infusions. They are not so bad, although I've only been through the first two.

I can bike ride and walk for periods of time. Over the past year and a half I walked through depression, the stages of grief, accepting the fact that I did everything to keep in optimal shape my whole life, every time I worked out my symptoms acted up. I didn't know what to do. Working out made it worse, so I stopped most exercise. I lost 15 lbs of muscle, my tone and definition decreased, my legs look like sticks (to me). I had given up.

It's something I still struggle with, although I am going to pt and working out a little bit. It's relearning everything from the beginning. No longer is it "work to fatigue, then work some more." It's work until you are starting to feel your symptoms worsen, then stop. It's pace yourself. It's do a little every day. It's frustrating as heck.

If I could go back in time one and a half years and give myself advice, it would be,"DO NOT STOP EXERCISING." I gave up. Now I have to work that much harder. I get to work harder, it could be worse.

Now my schedule is based upon how I may feel, what the weather is like, how fatigued will I be.
I'm lucky enough (yes) that I am usually able to use my environment to mask my symptoms when they are acting up. Running my hand along a wall, leaning on furniture...

I am in the closet with my diagnosis. When people ask me to run with them, or enter competitions, or play racquetball, I always find an excuse. I can't seem to get past the barrier of admitting to the world that I have ms.

I've come close so many times. To my business partner, to my friends, to people I mentor. Sometimes I am so frustrated, and people don't know I feel (like I am trying to control a robot exoskeleton).

In the past year I've dialed back my non-profit and volunteer work. I dropped off of a board. I'm still active, just not as much. I respect when I am tired, and when I need a break.

Now I keep an activity log. Not an every other day work out until I can't work out anymore. No longer is it "which muscle group will be sore for the next two days?" Now it is simply, "did I do an activity I can put on my log?" Some days it is an hour of bicycle, some days 12 sets back and triceps in the gym, some days it's one set of push ups, some days it's balance apparatus.

My barometer for how I measure personal physical success has changed. What I do to feel good about myself has changed. Did I fill the box in for that day on the calendar? If so, success.

[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]

New from Olympia, WA

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]

Michael Chazelle

: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]

New Canuck

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!