DM me :)

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Rodney
TrainingPeaks | Altra Running | RAD Roller
http://www.goinglong.ca

Can't help you but rock on! Glad you got a Dr to encourage you to stay active.

Done!

My wife was diagnosed with MS in January 2011 and completed her first two spring races following diagnosis and first baby (second due in less than a month) this past spring. Because we live in South Texas, training is problematic in the warmer months (most of the year) but she manages with sprint and has her eye on a 70.3 following the birth of kid 2.1. She's never aspired for a full 140.6, even before she was diagnosed.

Send a DM or email to dale@off242.com with specific questions, and I can pass them on. Also maintain good communication with your neurologist.

Best wishes on this new chapter in your life. You have the thoughts, prayers, and support of any whom you ask.

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#cureMS

Just stumbled upon this thread. I want to wish you the best. What was the trigger that you knew you were having your first MS attack if you don't mind me asking ? By the way, prior to this were you one of the "never get sick" people?

Thanks, Dev (and everyone) for the well-wishes

The primary symptom is double-vision. It isn't optic neuritis, but actual brain stem messing with the nervous system. I've been told my sight won't come back to normal, but it has improved some. It gets worse when I drink or am tired, and double bad when I drink and am tired. I'm thinking about starting drinking in the morning when I am more rested. I have special glasses I can use to allow me to drive.
What made me get this checked out was when I was racing Lake Stevens and started seeing double on the bike. Descending at 61kph and double vision is not fun but I just had to laugh!
My doctor says not to worry, that racing/training symptoms are just a reminder of the MS and to race/train through as best as I can.
This won't kill me, just messes with my energy levels and causes other symptoms that make me rest.Seems the best thing those with MS can do is to keep healthy diet (gluten free) and exercise.
Prior to the diagnosis, I'd classify myself a non-sick person. I would, however, get these crazy unexplainable medical things that would suddenly pop-up. We're now thinking my weird laundry list of niggly things may be MS related.

Wishing you the best Jackie. I can't offer a whole lot of info, but a friend of mine Crystal Phillips was an elite speedskater when she was diagnosed and she's done a lot of great work raising awareness and started the Branch Out Foundation that helps people dealing with nervous system diseases. Here's a link to their website http://www.branchoutfoundation.com/ and here's her Twitter account, https://twitter.com/crystalpatches.

She's got a great story and I feel like someone like you who has punched their ticket to Kona three times probably will too. So best of luck and keep us all posted. You'll be able to deal with these challenges and I have no doubt that your story will be able to inspire others someday soon.

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Raf
http://www.shutuplegs.org

I'm just doing a lot of research around my own illness (autoimmune, inflammatory) - I just started reading The Brains Way of Healing about neuroplasticity - in chapter 7 he refers to breakthrough work around MS:

http://en.wikipedia.org/...n.27s_Way_of_Healing

They are in clinical trials for MS:

http://www.heliusmedical.com/...arch/clinical-trials

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Advocating for research & treatment for Myalgic Encephalomyelitis (ME).
http://www.meaction.net/about/what-is-me/

"Suck it up, Buttercup"
(me, to myself, every day)

Check this link out. http://www.canada.com/...g/3905402/story.html
I may be able to put you in touch with her (would have to ask first).
She no longer races Ironman, but ITU para, I believe.

Hi Jackie...

Congrats on the 3x Kona showing!

I too have MS, and sorry to hear that your training is setting off triggers for new episodes. I have been fortunate in that my training for 1/2's has not been a trigger to any new episodes. I also mention my training to my neuro, and he has indicated that the aggressive exercise should not be a trigger to an MS event.

I cant point you to any site, but I can say that I get exhausted as the day goes on. Therefore I have to plan my 2 a-day work outs appropriately. All Swimming is done in the morning, there is no way i could hold intervals later in the day. The same goes for big gear bike work. I have found that I am able to run more at night without much noticeable loss that if i were to workout in the morning when i am most fresh.

I am taking the Gilenia pills to keep the MS at bay, and compared to the shots i was take I love it.

I guess the one benefit that i do have with MS is that i sure do get enough sleep. Im in bed by 8:30-9 almost every night.

Hope some of this info helps.

Mike

Lots of great reading, guys. Thanks for this. Seriously. Thanks.
Mike-great tip.
My neuro says the same thing too, the aggressive exercise will not make the MS worse, or cause new symptoms. But I find the fatigue messes with functioning fully. Such as the eye thing. Worse when I'm tired. And I can have power issues on the bike.
Great to know you get your more challenging work-outs done in the am. I will do the same.

A training partner of mine was diagnosed with MS around 15 years ago. She turned to marathon swimming, as she found that over heating could be triggers for her, so the swimming seemed a natural fit. She is going for a world record 105k open water swim this summer (105 freakin' kilometers!!) and is doing quite well managing a massive training load. So don't be afraid to bite off a big chunk of life and see what happens, just make sure you monitor yourself with your doctors and do your best to stay healthy!

Here is the link to my friends website for the swim: http://www.swimmerslastlonger.com/

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Long Chile was a silly place.

Hi Jackie,

Sorry to hear this- I know it isn't easy, especially in the first few months.

I got my MS dx about 5 and a half years ago. My diagnosis is actually what got me started in triathlon again after a long layoff. Since then, I've done 3 IMs, a bunch of 70.3s, Oly, you name it. While I'm not yet at the KQ level, I've gotten faster every year since my diagnosis. Getting dx'd with MS is a lot different now than it was 10 years ago. Lots of new drug therapies out there and a lot better understanding of how hard you can push yourself without causing progression.

My advice is to just keep kicking ass. Get at least 7-8 hrs of sleep- this is huge for me (as I type this at 1:30am). No sleep and my left leg stops behaving. On days when you feel fatigued, try to work out. I've found that the fatigue will usually go away after 20-30 min. If your symptoms pop up in a race, ice your neck and forearms. I know this is 101 stuff, but it will make a difference for you. Ice gets me thru Buffalo Springs every year!

PM me if you want. Hang tough.

Jim

Hey guys, what is the link between MS and left leg control. Do lesions on the right side of the brain develop more easily?

Hi Jackie,
I was on another media just minutes ago and saw this article. see link. Than I saw your post on ST!

http://www.dailymail.co.uk/...tiple-sclerosis.html

I hope this will inspire you.
All the best to you.

Very interesting and inspiring.
In fact all of these posts have been very inspiring. Thanks for this.
I guess what one tends to fear is the unknown. All these stories, tips and encouragement have helped heaps. At this point, I won't be running a marathon a day, or swimming across the Pacific Ocean (BCTriGuy), but you have encouraged me not to be complacent and to continue to reach for the top.
With Honu 70.3, Challenge Roth, Challenge Penticton Half and NYC Marathon on my plate, I'll let you know how it goes.
Big Thanks-
Jackie
PS- If you have any other inspiring stories, please post!

FWIW my sister was dx'd with MS and her first symptom was numbness in the nether regions.

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http://harvestmoon6.blogspot.com
https://www.caringbridge.org/visit/katasmit

Hi Dev,
I'm not a doctor, but I'll do my best to explain.

MS happens when the body's immune system gets confused and attacks it's own central nervous system. These attacks result in lesions that appear in the brain and/or spinal column. These lesions can cause a variety of problems. Some common ones are blurred vision, numbness in different parts of the body, balance trouble, and motor control. Depending on where the lesions happen, you get different symptoms. Symptoms can persist, or the can come and go. When the body's core temperature rises, it tends to exacerbate any symptoms, but it does not (from what I understand) trigger further damage to the CNS. For more info on why this is, see this link: http://jap.physiology.org/content/109/5/1531. MS is a progressive condition and while there is no cure yet, we have a number of disease modifying drugs that can help reduce the number and severity of attacks.

So to answer your question - I have trouble with my left leg because I have a lesion on my cervical spine. That lesion causes the signal to my left leg to get fouled up occasionally. This is part of what makes diagnosing MS challenging - symptoms vary greatly from one individual to the next depending on where the lesions happen. Using an MRI is generally how most people are diagnosed and it's how most people track progression.

Jim

Jackie, I was diagnosed in 2000. I woke up one day and the left side of my body was numb! Ugh! Cat scan to MRI led to MS. I never thought of it to much at the moment because I grew up watching my father suffer. He was in the ambulatory stage-wheel chair-nursing home stage and passed away at 44 years of AGE. Today I'm in my final year of 40-44. I'm going into my 4rth year of triathlon and will compete in my fourth Ironman at Whistler this year. Off to Honu tomorrow. It might be the closest I will ever get to Havi however I will take it!! I wish you a serious fight, hang in there. Push yourself it will not hurt!!! http://www.impactmagazine.ca/...e-articles/undefined

Jackie,

You get to be the recipient of my first post on Slowtwitch. I was diagnosed with MS back in 2006. I am a cyclist primarily and my brother is trying to get me into the world of triathlons via the gateway drug (relays). I will be riding the bike leg of a relay with him and a friend at Boise 70.3 next month. The very best advice I can give you is to live your life, not your disease. When I was first diagnosed, I started mentally crossing things off my bucket list, thinking "nope, not going to be able to do that now...nope, not that either". When you read about MS online, or talk to others with it, you can get yourself really depressed and terrified at what the disease can do. The best thing you can do is not dwell on worst case possibilities, but instead just go back into life, keep charging at your goals and dreams, and when the disease puts up an obstacle, find a way to go over, around, or through it. For me, it was the heat. I had already been riding one of the local MS150 rides for a couple of years in October. That meant most of my training rides were in July, August, and September. So I switched to riding in a different one that goes in April now so I can train in January, February, and March.

My biggest obstacle is the heat. When the air temperature gets above about 85 degrees, my performance starts going south rapidly. It is just like bonking in some ways in that I just can't make the same power for the same effort level when I get too hot. But everybody feels the effects of MS differently. I am happy to say that since my first major episode that got me on the path to an MS diagnosis (total hearing loss in my left ear for 8 weeks) back in 2004, I have not had any subsequent major relapses. I have gone from 2 lesions on my MRI to well over a dozen (the latest report says "innumerable"), but other than some minor fatigue, heat sensitivity, and cognitive issues, I have not had any significant physical disability develop. I am a much stronger rider today than I was when I was diagnosed in 2006, and I have recently lost 65 pounds and started working as a Spinning instructor at my gym in addition to my day job. I am so glad I didn't listen to my inner voice about what I wasn't going to be able to do back in 2006. I would have missed a bunch of really cool experiences.

So do your best to take care of your body when you can, but don't hold back because you think you can't. MS will let you know when you have done too much, but listen to your body and you will get better about knowing when you need to back off in training or racing. Best of luck and let me know if I can answer any questions for you.

Bill