Active MSer? Introduce Yourself Here!

[ActiveMSers]

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

[mchazelle@icloud.com]

Michael Chazelle

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

[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.

[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!

[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.

[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.

[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

[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". 😝😂

[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!

[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.

[VanR]

Newbie here

Hi everyone! I was just diagnosed April 17, 2018, so very recent. I'm a runner and also very active at the gym, doing all kinds of bootcamp/tabata/HIIT classes. I had been dealing with strange "symptoms " and injuries from late 2016 and all through 2017. Last March, during a half-marathon, I experienced a "floppy" left leg and had a difficult time finishing the race. My regular time was usually anywhere between 1:50 and 2:04, but I finished with a 2:15. At first I thought maybe I had not trained enough. A few months later, during a different race in September, I experienced the floppy leg again, and my time went to 2:37. Fast-forward to November 2017, and my time was now 2:44, with extreme leg fatigue and tightness and just overall crappy gait. Left leg numbness has been with me for a few years now, but it was always attributed to compressed sciatic nerve. My family doctor sent me for MRI of lower back, and in January 2018, I was told that I had a herniated disc at L5-S1. Spine specialist told me to stop all physical activity, specially running! Prescribed PT and rest for 3 months. I followed his advice, though it was very hard for me to stop running and the gym, and became very depressed. I attended PT 3x per week for over two months, with no real improvement. In fact, I feel like my legs became tighter and way more achy during this period of time! My PT, who's also a good friend of mine, referred me to a different spine doctor for a second opinion. During regular examination, he found hyperreflexia, and ordered cervical/thoracic MRI, plus lots of bloodwork to find vitamin deficiencies and test for lyme disease. The results revealed inflammation and tiny lessions at C3 and C5, and he immediately ordered brain MRI and referred me to a neurologist. A few lessions found on brain MRI. I have seen 3 different neurologists since, and they all agreed on MS. I am relieved to finally know what is wrong with me, but also a little terrified. Two of the neurologists I saw recommended I get on meds right away and gave me a few booklets. One of the doctors said we could go on a "wait and see" approach. All three doctors seem to agree that this is "mild MS", as I didn't have any other symptoms. (But I have read that starting out with leg problems as opposed to optic is actually not a good thing!)

In the past month I have started running and going to the gym again, though it is a struggle. I was used to running a 10k about 5-6x per week, and now even 2-3 miles are hard, as my left leg gives out and I get a little foot drop. But I'm not giving up and I feel much better (emotionally) since I started running again!

In the past 3 weeks or so, I have developed other symptoms: mild pins and needles in my right arm/hand that comes and goes; pins and needles in my right foot, that also comes and goes! My right little toe seems to always be asleep recently. I experienced a little tingling on half of my face a few days ago and it really freaked me out, but only lasted about 2 days, and it's now gone.

I'm really stressing about starting meds, since all the side effects sound a little scarier than my current symptoms! But I realize that it might not be smart to delay treatment. Meeting with the first neurologist (the one who diagnosed me) on June 1st.

Sorry for the long/ramble first post. I'm just glad to find this forum, and be able to hear about others going through the same thing as me.

Oh, also I'm female and just turned 42 three weeks ago.

[Afrayedknot]

My background is physics and engineering as well! And I fly for the challenge of it. What a coincidence. Maybe they should do a study on egg heads with pilots licenses. Personally think my type A personality got me in trouble in the first place.
BTW I fly in a club in Toledo. We have a Pietenpol aircamper..

[GoatHerder]

Thanks for the encouragement. Sorry you had to hang up your wings. I'm glad you found other things to keep your mind active. My disability is not visible to the world. Yet. Cognitive problems are my biggest complaint. My neck has been killing me for a few weeks. Legs are cramping up. The doctor said it's from my lesion on my spinal chord. Only going to get worse he said. HSCT seems like something I should do sooner rather than wait for things to get totally out of hand. I still want to build that Wittman Tailwind.

It was the leg cramps and vertigo that caused me to ground myself. I've not had any real cognitive issues to speak of. As an engineer and physicist, I was always in the top couple percent of brain usage. I don't do the Calculus in my head anymore, but I think that's more from non use than M.S. symptoms.

I find taking care of my farm and animals a very rewarding pastime now.

Wittman Tailwind sounds like a great project! I did keep my CNC plasma cutter from my old aircraft building days. I find it quite handy on the farm for making tools and farm implements.

[Afrayedknot]

Thanks for the encouragement. Sorry you had to hang up your wings. I'm glad you found other things to keep your mind active. My disability is not visible to the world. Yet. Cognitive problems are my biggest complaint. My neck has been killing me for a few weeks. Legs are cramping up. The doctor said it's from my lesion on my spinal chord. Only going to get worse he said. HSCT seems like something I should do sooner rather than wait for things to get totally out of hand. I still want to build that Wittman Tailwind.

[GoatHerder]

Hi, My name is Andy. I'm 45 and live in Michigan. Work as an engineer in the automotive industry. Love walking my dog and giving flight instruction. I was diagnosed end of 2016. Lately, my cognitive is worsening and spasticity is starting. Was taking Tecfidera. MRI from Tuesday shows new enhancing lesions. Wednesday I was accepted to the Northwestern HSCT trial in Chicago. I'm starting the washout period for the next three months. Scared about stopping tecfidera. I'm learning allot about the pros and cons with HSCT on here. Having second thoughts.

Hi Andy,
I had just finished building a new autogyro when M.S. hit me. I got to only fly it once, then permanently grounded myself after that. Gosh I miss it. I've been on Avonex interferon since diagnosis and have responded well to it the last 17 years.

My gait is terrible, so I go around outside of my house in a power wheelchair. For every door that has closed for me because of my condition, I have found a new one to open. No, I can't fly, or sail or many other things I used to enjoy, but I have found new outlets for my engineering background (EE) so in a way, M.S. has actually enhanced my life considerably!

Welcome to the forum!