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Hi there. My first post. I am so happy to find this site and read Dr. Jelinik's great book in one sitting back in NZ at the MSSociety. I am a NZer but I live in HK and was hospitalized 2-months ago with Ataxia and polyuria. After CT, Evoked Potentials and MRI the Specialist here said he think I have MS but nothing shows yet. Blood tests were clear too. He wants to keep seeing me in the next few months. I also Went home to NZ and did some more tests which backed up what the HK spec said. My teaching contract lasts to August and at this stage I will go home then.

My remaining symptoms are tingling hands, poor circulation, anxiety and feeling unbalanced after walking 10-minutes or so. Anyway I am giving the diet a go. I think I will lose some weight with doing that at any rate which I believe would be useful for anybody who may encounter other health issues due to forced inactivity.

Before my episode I was a fitness freak according to everyone who knows me. Some even thought initially I had just overtrained. As a background I exercise every day and I usually do 2-3 marathons each year. I had entered Tokyo(my favorite destination race) which is at the end of this month and qualified for Boston(this is like making the Olympics for an average runner) in April. Obviously these races are not on now with too little preparation time left but I am wondering whether people on here think I should change my goals in sports now that I have the MS spectre hanging over me? I ask because running makes me happy and I have found that I keep my balance easier when I run than if I walk. Also about 4- years ago I felt really unwell too with fatigue and clumsiness. I was injured then and not running. My doctor decided then I was stressed and suffering runners withdrawal, however, I now think it might have been an early episode.
My own personal instinct would be to avoid extended physical stress on your body. I've never run a marathon (or anything more than 5 or 6 miles), but I've seen how depleted some people get afterward and it seems like a bad idea. I've only had two exacerbations- one happened shortly after extreme physical and emotional stress, the other during extreme emotional stress only. I'm not saying you have to baby yourself, but it's been documented that MS is triggered by stressors both physical and emotional.
Remember, if you've had an exacerbation, you need to calm your immune system down and allow healing to start. If your ankle was fractured you wouldn't run on it. Whether or not what you're experiencing is MS, you most certainly have some sort of damage in your brain and nervous system. Don't freak out though- if you've kept fit you're better off than most. Something is out of balance (no pun intended) and you need to figure out what it is and set it straight. If you've found your way to Dr. J's OMS program, then you must have a good head on your shoulders. I really hope what you're experiencing isn't MS, but if it is, welcome to the OMS marathon! You want a challenge? Come join the pack. We smell like sardines and cheese is our kryptonite, but we make a great green smoothie and we pack one hell of a Vitamin D level.
One other thing.... You mentioned doing the diet, but didn't mention anything else. Make sure you do as much of the recovery program as possible. It sounds like the diet for you won't be a huge deal, and you obviously have no problem with exercise. Meditate every day if you don't already. Many people on here will tell you what a massive difference this makes including me. You can completely ditch the anxiety. Dr. J talks a little in his book about the "MS personality", and I'm at the point now that I agree 100%. I bet that there isn't a single person on this forum with MS that could be described as laid-back. We're intense people capable of stressing ourselves out to the point that our own body begins to attack itself just to try to make us chill. You have to learn how to unplug. It won't make you lazy or less effective in life- quite the opposite. I've accomplished more in the past two months since reading Prof. J's book and starting the program than I would have believed possible. This meditation thing is strong medicine.
Hi Reddogrunning...

Excellent question and I think one you should consider seriously. You will no doubt hear plenty of people telling you what you can't do, but I believe it is vitally important to figure out what you want to do and pursue it. Having MS will undoubtedly change your approach and cause you to look at how you achieve your goals from a different perspective...but hopefully one that is not controlled by your MS (if that makes sense to you). I also exercise regularly (2,5 years on the program now and able to bike 20 km and jog 5 km in the same workout) and feel extremely blessed and grateful for being able to achieve even the smallest of goals. I was barely able to walk a couple of km shortly after my DX and just stubbornly told myself this would not be permanent. There are many cautions you should abide by - the most important of which will be unique and come directly from your body. Do the research and follow this program very strictly and you should be fine; this is where your control is! Here is a couple of stories of athletes with MS who pursued their goals of competing in a triathlon:

http://mstriathlete.blogspot.com/
http://www.posetech.com/library/oa-DK-0003.html

I find their stories incredibly motivating. Wishing you the very best of luck and health...
Jack
Diagnosis: Jul 2009
OMS: Jan 2010
Thanks for the comments guys and also those links. Meditaion is something I have to learn more about. I always thought of running as my mental cleansing time. Rarely do I make myself stressed by running I am more likely to be stressed if I miss a run. Loved the smelling like sardines and cheese analogy!
Everyone's different - I think you should stick with running, but be mentally prepared that your limits may have changed - listen to your body. I started running AFTER I was diagnosed with MS and I love the boost it gives to my energy levels and mood; nothing as intense as your workouts, but I regularly run 5K and do 10K races too.
If you can't achieve the same levels you used to and find it depressing, maybe try starting with a new sport.
Swank has a fair bit to say on the subject of exercise, particularly strenuous exercise, and relapse. If you are able to get a copy of The Multiple Sclerosis Diet Book, it may shine some light on the subject for you.

As a point of interest he also notes that people are typically very active, energetic and driven before the onset of MS.

It's a good background to the OMS diet and also very interesting to see how someone who concentrated solely on MS cared for his 'patients'.

There were plenty of 'bells and whistles' in Swank's model of care, that you probably won't get from your neurologist...
Thanks for the Swank book recommendation too Lozza. Interesting about becoming more driven before an attack. I was doing a lot of stressful things - working full time in a foreign place, doing a masters, keeping relationships tick over and trying to train for a marathon. I ordered a copy last week actually.
Catriona I liked your comments too. I actually jogged in the 10km race of the HK Marathon this weekend. It was fun to run happily with different people instead of busting myself trying to race against the usual people. It felt great running but watching at the finish for friends doing the half and full became most uncomfortbale as it got hotter. When I walked to the train I was very unsteady on my feet. Then when I showered I discovered a raw blister which I was totally unaware of. Feeling no pain is not a good thing!
reddogrunning wrote: Thanks for the Swank book recommendation too Lozza. Interesting about becoming more driven before an attack. I was doing a lot of stressful things - working full time in a foreign place, doing a masters, keeping relationships tick over and trying to train for a marathon. I ordered a copy last week actually.
Catriona I liked your comments too. I actually jogged in the 10km race of the HK Marathon this weekend. It was fun to run happily with different people instead of busting myself trying to race against the usual people. It felt great running but watching at the finish for friends doing the half and full became most uncomfortbale as it got hotter. When I walked to the train I was very unsteady on my feet. Then when I showered I discovered a raw blister which I was totally unaware of. Feeling no pain is not a good thing!


Reddog, this whole experience is going to change your life for the better in ways that will amaze you. Even though I'm not a runner, I understand what you're going through completely. I'm a professional classical musician by trade, and the past week has been a real eye opener. December was a major turning point for me. I'm a brass player- and I had my usual line up of somewhere around 26 performances of the Nutcracker to perform. The day after Thanksgiving (Nov. 25), I woke up with severe double vision and found the upper right side of my face and lip was somewhat paralyzed. For me, this was the equivalent of foot-drop for you. I somehow managed to make it through to the end of the month. It wasn't pretty. I was afraid to let any of my colleagues know what was going on because I figured I'd get blacklisted and never work again. There is very little work these days for career musicians, and showing even the slightest weakness is usually the end. As of Dec. 23rd I played my last Nutcracker for the season and put my horn away not knowing whether I'd ever play again. I've been playing horn for 25 years, and for the first time in 21 years, I was going to take more than one day off from practicing or performing. I think I took two days off when I was 14 and had my wisdom teeth removed. That was a long time ago. I spent January learning to meditate. I decided that since I now had at least an extra three to six hours a day free (my usual practicing time), I should use it. I basically spent my time walking, meditating, and reading. I didn't even listen to music. Like you mentioned, my practice sessions had always been what I considered meditation. Hours and hours of repetitive scales and intervals seemed to relax me. What I came to realize was that I wasn't really more relaxed after practicing- I was less anxious. This is because I always have had this idea in my head that there is always someone out there who puts in 5 minutes more work after I quit for the day. I made a decision on new year's day that I would not pick up my horn again until I had a good reason. Fortunately I have a few broadway nat'l tours coming up in the spring, so I could afford to turn down all gigs in January (barely).
Four days ago, I received a call from a friend who was in a panic because he had a recording session scheduled for the following day as part of a grant requirement, and his horn players had suddenly backed out. I agreed to come play lead, and pulled my horn out for around 15 minutes that evening (the night before the session). The next day I had the best recording session I think I've ever had. I didn't pull off any amazing physical feats, and that didn't matter. For once it was just about the music, not about competing. In your case reddog, I think this would be like racing for the pure joy of running, not to compete.
Look for this sort of thing not just in running, but in the rest of your life. I'm sure all of us on this forum have heard the saying "It's about the journey, not the destination". Most of us have probably given this advice to other people. How many of us truly live our lives that way? I wasn't. It's been through mindfulness meditation that I've figured out how to unplug and really savor the moment. Remember when you were young and you laid down in the grass and just watched a cloud for a while because it looked interesting. That's not just something for kids. We should ALL have moments like that every day throughout our lives. I don't know you, we've never met, but I know what it takes to compete at the highest levels of something, and I know what kind of personality that sort of thing attracts and more importantly, what sort of dysfunction it creates. Don't drop the ball on this meditation thing- my gut tells me it's absolutely crucial for you like it has been for me. At the very least it can't hurt, right?
hornpreaux - professional horn player - that's cute!

Meditation is very important because it quietens the mind and gives the body chance to achieve it's natural state of balance, and start healing. At Georges retreat last week we were shown this amazing animation of the Inner Life of a Cell. You can see the lipids (fats) moving through, white blood cells fighting infection and much more.
http://multimedia.mcb.harvard.edu/anim_ ... music.html

Wendy
Wendy

Diagnosis Dec 1998 OMS Feb 2010 Retreat Feb 2012
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