Multiple Sclerosis and Ironman

Triathlon Forum
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Hello Triathlon Friends
I just got diagnosed with Multiple Sclerosis. I’m still not sure it is what I am struggling with as I’ve seen 3 different neurologists and no one is in total agreement. I’m searching for as much information as possible and if anyone has an info/experience etc I would be very appreciative.

I recently posted a question on the USAT coaches group and I’ve been receiving a lot of good information. I hope to continue to learn as much as I can. Sorry for the lengthy post here but thanks in advance for your help!

I am reaching out on a personal level- as a coach and Ironman Athlete.

I have been racing Ironman since 2005. Before that I did a lot of biking, spinning, running, strength work, Pilates and things and have really been in good shape from 1996 through the now. However, during 04 I started having some weird health stuff and although 05 was a successful year of training and racing I struggled a bit with fatigue, weakness, hair loss, low bone mass and unexplainable itching. We attributed this all to over training, teaching classes, coaching and working a full time job.

In 2006 I focused on sleep, lessened my training load and still had similar issues.

In 2007 I had a big year with Lake Placid and IM Wisconsin along with a couple of 70.3s. I seemed to struggle with a lot of stomach issues, urinary tract infections and more weakness, hair loss, itching and fatigue. I did qualify for Hawaii at IM WI though and shuffled through Clearwater in November and then I took a long break once again.

In 2008 I continue to struggle with fatigue, hair loss, itching and the first ½ of the year I really struggled with stomach issues.
Over the years I have seen PCPs, an allergist, a rheumatologist, endocrinologists, ENTs, gastroenterologists and just lately, 3 neurologists.

I experienced my first DNF at IM CDA this June. I trained so hard for the race and was expecting to perform very well after pulling out of Eagleman the week of, seeing the GI doc and starting on a medication for colon ulcers and gastric emptying issues that was discovered. But instead I had horrible stomach pain all morning, struggled through the swim after getting kicked in the head right at the beginning and road in a fog. I thought I had a concussion? I felt so disoriented on the bike and threw up throughout the ride. I fell into the volunteers arms coming into T2 and rested on a cot for 45 min, tried to run but ended in an ambulance at mile 7.

I took it easy once again for the next several weeks but did 3 ½ Iron distance races July 20th, July 27th and Aug 2nd –but the morning after Newfoundland 70.3, July 28th, my health really deteriorated. I became really dizzy, weak and nauseous. This continued for weeks with 3 to 5 days each week filled with Vertigo. I saw a neurologist and he said it was Migraines and sent me out with an Rx for Topamax. I insisted on an MRI after a recent trip to the ER and a CT scan that seemed okay. The MRI showed a lesion consistent with MS. I then saw another neurologist, had a lumbar puncture and it detected high levels of proteins consistent with MS. I also had 20tubes of blood drawn. Next was another trip to the ER after a stroke like attack, then the MS specialist who ordered more MRIs and a few more lesions were discovered in the cervical spine. No lesions seemed to be active though?

So, I have been diagnosed with MS as of September 16th.
I do have a lot of weird symptoms but two of the three neurologist still do not feel it fits MS. I started a medication for MS, Copaxone, and I continue to feel a bit better every day but still have some dizziness and weird vision issues along with tons of fatigue.

Another doctor just added Provigil and I did my first workout Friday after being off for nearly 15 days. I did an easy bike, super short swim and short run. I felt weak but to be expected after the downtime but I was so happy to be working out. I tried to ride the IM WI course yesterday but only made 88 miles as I was just too weak.
I used to train 18 to 25 hours a week. But since June that really has lessened and in August I only got a couple short workouts in consisting of only 1 swim, some bikes, and somehow I rallied and got one great 144mile ride on the IM WI course in just over 7hrs, a couple of runs of which only 1 up to 60min. September’s total training is even less with a couple trainer rides, 1 IM WI ride on the trainer, several failed attempts at Hawaii on the CompuTrainer and a couple short runs and then this past Friday and Saturdays workouts.

So here is the deal, I am supposed to do Ironman Hawaii Oct 11th.
Sometimes I think I have the base to pull me through and sometimes I just don’t think I’ll make it at all.

I am desperate for help. I am looking for advice and any knowledge that anyone may have on Multiple Sclerosis and Ironman athletes. I’m reading and researching as much as I can but your help is so appreciated. And if anyone has any other thoughts on what else perhaps I’m suffering from, please share, I know there are several physicians on this coaches group.

I’m working with a new team of doctors and will be looking into mercury toxicity, a chronic fatigue panel and more yet as I’m determined to fight this- whether it’s MS or another autoimmune issue. I know I can get better but I know it’s going to take a lot of work. Your help is greatly appreciated. Thank you in advance for any information you might be able to provide.

Wishing you all the best in your training, racing and coaching and thanks again!
-Kel

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Hey, thanks for sharing your experience. I’ve read a lot about how MS is a disease with a high incidence of occurence in Northern Latittude where sunlight and Vitamin D exposure is reduced, especially in the winter…MS rates in the Canadian Praries and Scotland are much higher per 1000 than in tropical countries. Regardless, take care of yourself. Hawaii is just another race…it is a cool race, but not worth risking any damange.

With any of these autoimmune diseases, I’ve read that a stressful event can cause some kind of trangression of the T cells across the blood brain barrier, resulting in ones own immune system attacking its own healthy central nervous system…not quite sure if putting the stress of IM hawaii is worth risking another potential MS attack and further potential deterioration of brain/CNS function.

Seriously though, just talk with your Neurologist at this point! Please keep us posted!

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I’m sure you have read everything, but this is a good read from wikipedia:

http://en.wikipedia.org/wiki/Pathophysiology_of_multiple_sclerosis.

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I forwarded your post to a few good friends who both have MS but compete in triathlon at a high level. In fact, I think one is sponsored by Copaxone. One is more focused on XTERRA, the other XTERRA and ITU AWAD. Hopefully they can help. You might also want to contact the challenged athletes foundation for other references. There are a number of amazing triathletes (and athletes in other sports) who have MS. For example, do you know who Wingnut is? The professional surfer from the movie Endless Summer 2? He has MS too. You’re not alone and you are not done with triathlon, not by a long shot!
Best,
Ryan Levinson
(posting from my wife’s account because I swore off Slowtwitch a while back. Your post is important)

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Thank you so much for the good info so far and for passing it along to others with MS. I am thankful for your time and help. thanks for the support and encouragement. I wish you both the best too!
-Kel

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You just got a really good reply from the coaches group by Dr. Phil. You should go read it.

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Kel,
My name is Robbie and I was diagnosed with MS in 2001. I’ve been racing ITU, 1/2 IM and Xterra ever since. The questions you posted are very important and probably are best discussed on a phone call. My email is robbie@tri4ms.org , please ping me and I will send you my cell # so we can arrange a call.
The good news is there are a number of us with MS that race and continue to race, we use many of the current drugs and they work very well. I live in San Francisco and work with the National MS Society, CAF and UCSF on many levels as a advocate and a test subject. My personal Neurologist is the head of the MS center at UCSF and one of the original team that worked on the first drug for MS so I have a lot of information about the disease. As an MS patient I also have the personal experience of the disease outside of the science. Bottom line is that MS is a challenge but it can be well managed and does not have to stop you from racing.

Lets Talk

Robbie

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Hey Kelly,

I’m friends with Robbie and Ryan and I’ve had MS for 6 years and been on Copaxone for 5. I race many times a year and will be heading to Xterra this weekend at Lake Tahoe with at least 2 other MS athletes. I believe my long time coach, Connie, has already contacted you on the coaching forum and I would instruct you to join up with her if she offers. She has been awesome for me and started coaching me when I couldn’t even swim 1 lap or run 1/10 of a mile.
I also extend the offer to talk to you whenever, just PM me on here with your number and I’ll call. Like Robbie, I work with the Ntl MS Society, CAF, and also the USAT Physically Challenged Team.

This is not a death sentence, but you will have to make a lot of adjustments and be careful with your training load. You can do great things and enjoy triathlon with MS. I look forward to hearing about your progress.
david K

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David and Robbie
thanks so much for reaching out to me, sharing your words of wisdom and experience. I am so thankful! yes- i’ve been speaking to tons of coaches and other athletes. it truly is so helpful!
i’m so glad to hear how well you are doing and that I’ll still be able to enjoy triathlon!
if i continue to feel better- should i try Kona then Oct 11th???
yes- please do send any info you may have and I do want to get involved with MS society and more- if you have suggestions/connections let me know as well. I even thought of starting a foundation or something for athletes mastering MS:)
let’s talk more!
thanks so much!!!
-Kel
kelly@energyfitnesscoaching.com
419 508 9119

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Kelly,
I encourage you to ask that question to Connie. We, as athletes, are not the most objective folks when it comes to our bodies vs. our desire to perform/compete. In my experience, Connie, and the coaching group she is afffiliated with, is doing more than any other endurance coaches in regards to athlete tracking. That’s a mouthful, but I’m also in the “business” and know how and what people prescribe to their athletes. I may be being unfair to other coaches, but Connie can smell overtraining well before I feel it. She has also worked with several other athletes with MS, not just me and has become quite the specialist. The More is More concept does not work for us, unfortunately.

Also, contact your local chapter of the MS Society and request ALL of their free resources and get on their mailing list. Keep in touch with Robbie, Connie and I and we’ll see you through this!!

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Ahh thanks so much- Connie has been awesome- she does recommend not doing it and resting but is supporting me saying that I likely have the base to finish Ironman Hawaii and I would just need to listen to my body. She has offered a ton of good suggestions and advice and I’ll continue to be in touch with her! thanks so much again! have an awesome day!
-kel

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I am going through similar health issues (i.e.: something big, lots of symptoms, hard to diagnose, etc.) so your post really speaks to me. I too am being tested for MS now.

However, I have personally lived with someone who eventually died from MS. She deteriorated pretty quickly. You might not, you may be able to sustain enough muscle mass to keep you moving longer than most.

Go do IMH and enjoy it. Even if it takes 16:59:59 to finish it. You may be in a wheelchair in 5 years. I am hoping that you are not, but you have no idea what could happen tomorrow. You may never do another Ironman again.

Good luck. Hang tough. Keep us posted.

AP

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Wow Andy- I’m so sorry to hear! Gosh, I am praying for you and wishing you the best! I am sorry to hear about your friend, that is awful. I will be thinking of you and please keep in touch. You can email anytime- kelly@energyfitnessocoaching.com
This is a wake up call for sure and it’s scary- we do never know what tomorrow will bring the scarier thing is what if we could have done something to prevent the bad outcomes but what if we never take the chances and miss out as well. Life is not easy that is for sure and there is so much uncertainty out there which is why there is a bigger picture of emotions and challenges that we are all facing. I hope things improve for you! I am so thankful for all the people that care and are concerned. It’s been amazing. I continue to pray and I hope God will lead me in the right direction. All the best to you!
-Kel

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Hi Kelly,

Thanks for sharing your story, I’m sorry to hear about your recent troubles. You sound like a person of great faith and determination and I’m sure you’ll fight hard make the best of whatever is to come. I hope you receive a great response for your request for information, I’m sure there are some slowtwitchers out there that will come forward with info. I’m not a doctor or in a position to help you there, but I have a conection to MS and Ironman as well.

My sister, Barb and I enjoyed triathlon together until she was diagnosed with MS in the early '90’s. When I was finally able to make it into an Ironman in 2007 I dedicated my efforts to her and decided to raise funds for MS research. I’ve now completed 2 IM’s and have raised over $20,000 for MS research here in Canada. My goal is 5 Ironmans, 5 years and $50,000.
MS is common here in Canada, possibly due to a lack of sunlight and vitamin D. There is lot’s of research going on all over the world and they are making breakthroughs. My dream is for Barb to be able one day to return to the sport we both loved so much and hit the starting line together.

Hang in there, I know you will and please keep us all posted on how you are doing.

Chris MacMillan
Toronto
www.kentuckyboundironman.blogspot.com

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Kelly,

I sent you an email… I dunno if it worked, I removed the o prior to coaching.com above.

I was dx in May 2008.

“life is not about surviving the storm, but learning to dance in the rain…”

I sent a link to Rod’s Hairy Toads, which you can find with a google search. We did an MS ride as a reunion of cycling buddies and to encourage me never to give up. You really find out who your freinds are, when life throws you a curve.

Hang in there, and PM me if you’d like.

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My daughter got diagnosed with MS just over a year ago when she was only 15. She has been on medication (beteseron) for a year and hasn’t suffered any further attacks. She just had her most recent MRI on Sept. 22 and things are going very well for her. She finds that she gets fatigued more easily than a few years ago but is quite an active and “normal” (at least as normal as she could expect with a nut for a dad!) teen. If your case is similar to hers and not of the progressive variety that really seems to hit people hard then training and racing would probably be recommended by your neurologist as long as you don’t over train yourself into immune problems.

Best of luck and keep a positive outlook. I am constantly amazed with my daughter and how well she handles being diagnosed with this disease.

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Allan, thanks for the good news about your daughter!

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Hey Gang
you all are so awesome!!
thank you ever so much for all the great information, stories and encouragement!
Rodney- thanks for the cool link- keep up the great work and energy- you are awesome. let’s stay in touch- i would love to put on an event and support the research of MS too!!
Allan, I am so sorry to hear about your daughter but I’m so glad she is doing well. It sounds like she has a great dad!!

thanks again everyone! all the best and talk to you soon!
-Kel

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Kelly:

Contact the Heuga Center for Multiple Sclerosis in Vail, Colorado, and speak with someone there or sign up for one of their programs, which they run throughout the country. www.heuga.org. The programs address all sorts of needs, and the Center has some excellent therapists, doctors and nurses on staff.

Best of luck,

Brad Kennedy

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Kel –

Here for you night and day…
You have “unfinished business” and I, among others, will be there with you to get it done…When you know you are ready… Kona, 2009, getting it done and more!
Love You!

Cherri