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Thank you Tony,

I didn't have the words, but that is what it feels like has been happening in my hips. I have explained it to people that it feels like I'm "stomping" when I'm running. It is not fluid at all anymore; no smooth stride. I will now become a power walker until I can no longer do that.

What I really take from this post is this:

Don't push yourself too damn hard! That is what I've been doing. It's like every flight of stairs is a test. I have to take them two at a time to prove to myself that I still can. Can anyone say DENIAL? I just need to accept the fact that I have MS and structure my activity accordingly. My wife is literally one calendar year from her RN and I think I've just been looking the other way until she gets done. I've been fooling myself in thinking "I'll just let out a deep breath when that time comes".

The only thing I forgot was MS is not aware of my timeline.

Thanks for the info. Tony and Bob. It is greatly appreciated. I plan to start my "walking like a geek" and yoga as soon as possible. I am just such a damn fighter. I think I need to practice some acceptance soon or I'm going to drive myself bonkers. Oh well, it's my birthday anyway! 41 today!

Lew

Thanks Bob!

I didn't doubt you Tony but I had to look it up and figured I'd save the others from the effort. Bob

Thanks Bob, people often use other word - 'arthritis' instead of arthrosis, which is incorrect, there are two different conditions.

Kind regards,
Tony

BELMONT, Mass., April 30 -- Exercise-associated hyponatremia, a potentially fatal condition of endurance athletes, may be brought on by suppression of renal water excretion exacerbated by excess fluid intake, investigators here reported.


The deaths in 2002 of two runners who had completed the Boston Marathon, and the post-race collapse of several runners in other years, prompted Arthur J. Siegel, M.D., at McLean Hospital, and colleagues, to look into the contributory mechanisms of antidiuresis.


They found that disturbance of arginine vasopressin (antidiuretic hormone) secretion, brought on by release of interleukin-6 associated with excess fluid and electrolyte intake, triggered a cascade leading to hypotonic encephalopathy and the two cases of fatal cerebral edema, the investigators reported in the May issue of the American Journal of Medicine.


"This is a major paradigm shift for those who think that exercise-associated hyponatremia is due primarily to salt loss or over-consumption of fluids," said Dr. Siegel. "It's also an inside job. Avid drinking may be a precondition, but dysregulation of the anti-diuretic hormone or arginine vasopressin (AVP), which governs water balance, emerges as the root cause."


Dr. Siegel, a runner and member of the Boston Marathon medical team, cautioned that marathoners should take extra precautions to avoid risking hyponatremia.


"The message especially for slower runners, such as charity fundraisers, is awareness that over-hydration is more dangerous than dehydration," he said. "Such participants may need to decrease their drinking rate commensurate with their race pace."


He noted that runners who gain rather than lose weight during training or a race are over-hydrating and need to cut back on both water and sports-drink consumption.


The investigators studied pre- and post-race blood samples from 39 runners who took part in the 2001 Boston Marathon, from 308 runners who collapsed and were treated in the medical tent after the 2004 iteration of the race, and stored blood samples from two runners who had died from cerebral edema.


They tested the samples for creatine kinase, interleukin-6, arginine vasopressin, cortisol, prolactin, and C-reactive protein on the day before the race, and within two hours of the finish. Eleven of the volunteers also provided samples the day after the race.


They found that the runners with normal sodium levels had a mean 3% decrease in body weight, and showed a 40-fold increase in serum levels of the inflammatory cytokine interleukin-6. In these runners, IL-6 levels rose from a mean of 1.6 + 0.5 picograms/mL to 66.6 + 11.9 pg/mL (P=0.001), and this increase correlated significantly with increases in creatine kinase, cortisol, and prolactin, but not arginine vasopression.


In contrast, among 22 collapsed runners with exercise-associated hyponatremia, blood urea nitrogen levels were within the normal reference range, with a mean level of less than 15 mg/dL, but 43% of these runners had measurable levels of arginine vasopressin of more than 0.5 pg/mL, indicating that suppression of water excretion rather than excess fluid load might account for the discrepancy.


"The absence of urination in cases of exercise-associated hyponatremia during treatment in the medical tent indicates that vasopressin levels were sufficient to impair maximal urine free-water excretion," the authors wrote. "This clinical feature also was present in cases of exercise-associated hyponatremia without measurable hormone, suggesting ex-vivo proteolysis as the likely explanation for the negative findings in some specimens."


When they looked at the samples from the two marathoners who died from cerebral edema, they found evidence of less than maximally dilute urines (>100 mmol/kg/H2O) and urinary sodium concentrations greater than 25 mEq/L, which, in combination with elevated cortisol levels and normal thyroid function, suggested the presence of the syndrome of inappropriate antidiuretic hormone secretion, first described in 1967.


The authors noted that in more recent Boston marathons runners who developed hypotonic encephalopathy were treated with intravenous hypertonic (3%) saline, and experienced rapid clinical improvement without adverse effects.


"Similar to the effects on cortisol and prolactin, stimulation of arginine vasopressin by interleukin-6 may interfere with appropriate physiologic suppression during hypo-osmolality," Dr. Siegel and colleagues wrote.


"Rhabdomyolysis may be linked to the pathogenesis of exercise-associated hyponatremia as has been observed in other clinical conditions in which the syndrome of inappropriate antidiuretic hormone secretion may accompany inflammatory stress. This paradigm provides a unified explanation for the pathogenesis and clinical features of exercise-associated hyponatremia, rather than postulating multiple independent mechanisms."

-end of the article

As I told before, I’m against running, esp. for MS people. Now get through number of changes in the body during and after running, and guess - is it healthy?

Kind regards,
Tony

Glad you brought up this topic. The incident that led to my diagnosis 2 years ago in July followed a week of pretty intense running in the summer heat. I've had no relapses since, but running and/or lifting weights in the heat wipes me out and I avoid it. I've been walking on the treadmill and lifting light weights instead.

TonyJegs wrote:As I told before, I’m against running, esp. for MS people. Now get through number of changes in the body during and after running, and guess - is it healthy?

I'm sorry Tony, but I'd say stating that kind of opinion makes me doubt your level of "MS expertise". Here in Scandinavia most experts think that if one is still able to do it, any kind of aerobic exercise (including running) is able to help MSers. I personally am aware of a MSer who runs two marathons a year, and he is obviously in excellent shape. Exercising won't cure MS, but especially in milder cases the right kind of combination of aerobic and anaerobic training surely can help managing this disease.

Brownsfan wrote:...running and/or lifting weights in the heat wipes me out and I avoid it. I've been walking on the treadmill and lifting light weights instead.

Heat alone can make symptoms much worse. Here in Finland we usually go to sauna at least once a week, and it is always well heated (65-100 degrees Celcius). It is an enjoyment for most Finns, but there are MSers who can't tolerate it at all anymore (unfortunately I'm one of them).

Be well

-finn

finn wrote: Here in Scandinavia most experts think that if one is still able to do it, any kind of aerobic exercise (including running) is able to help MSers...

Here in Finland we usually go to sauna at least once a week, and it is always well heated (65-100 degrees Celcius).

-finn

Somehow I have an impression that in Scandinavian countries (Denmark, Norway and Sweden) they don’t think that Finland belongs to Scandinavia, of course it is my personal observation based on long private conversations with Scandinavians (I used to live in Denmark for a while and I speak Danish).

More seriously, when you state something which contradicts to mainstream ideas you always will be accused at least in lack of competence. Well, I can live with that , and I actually don’t care much of other opinions, esp. non-professional ones.
I remember one story about Scandinavian ‘experts’. One good friend of mine (Nobel Prize nominee, by the way), have decided to organized a study in Sweden. When the group was formed, she asked to remove black people from the list because they have different metabolism, different genetics, etc, and this was the only reason why. All of a sudden, she was accused by Swedes being a racist and her detailed explanations didn’t work out. Well, she moved the study to other country (American money rules) and there were no black colored participants. The study was successful, and still in use for many articles worldwide.
The point is, there are a lot of blindsided people around, and if you want to learn something new, please, keep your mind open.

I repeat here the tiny part of the article which has importance for MS:
“They found … a 40-fold increase in serum levels of the inflammatory cytokine interleukin-6 [in runners]…”, and if you think that it is good for MS, well, we really think and see things differently.

I mentioned before about joints problem, it’s still there also.
About 2 years ago there was an article in Tribune about marathon runners. Statistically, up to 70% (!) of them finished their life with knee replacements. I was pleasantly surprised by this article, not so often you find this in regular press, mostly they are fond of junk science with ‘amazing discoveries’.

By the way, I had an impression that proper Finnish sauna temperature must be 70 degrees C, not more.
Higher temperature is hazardous for human health; check on ‘heat proteins’.

Kind regards,
Tony

This is good , keep it up!

I was in Denmark for a month as an exchange student in my early teens and the people I stayed with had a sauna in their house! Anyway, when I first got dx'd it was at my old racquetball club. The sauna was where I would get dressed to play since it also helped warm up my muscles and what not. After the ON first appeared, I would NEVER get into a sauna since I would come out with seriously impaired vision.

If I went into a sauna now, you would have to carry me out. There is no way that I will ever think that a sauna or hot tub has any positive effect on me at all. I am still exercising, but not like an athlete anymore. If your body won't let you jog because your gait gets "herky jerky" when hot, it is hell on your joints. There have been some times when I'm stumbling so much that I have landed on one foot with my leg in the locked position. Let me tell you, it felt like Llhermitte's on steroids.

I feel like my hard cardio workouts were beneficial while I was still able to do them and not completely trash my legs for the rest of the day and part of the next. Now that these things accompany a jog, I feel like doing it is detrimental. I think you should exercise in a manner that you feel is not tearing you down, and for me, the jogging became that since my weakness and spastic legs made it so.

Tony,

I know you always know better. After all, you're the professional :-)

TonyJegs wrote:I repeat here the tiny part of the article which has importance for MS:
“They found … a 40-fold increase in serum levels of the inflammatory cytokine interleukin-6 [in runners]…”, and if you think that it is good for MS, well, we really think and see things differently.

In this case I'd say I'm pleased I think and see differently than you. I have a feeling you haven't ever exercised that much, have you? If you had, I believe you'd know that running a marathon is an extreme event when compared to running shorter distances. And you might also know the benefits one could gain by running (especially cross country), such as improved stamina, endurance, coordination and balance.

TonyJegs wrote:The point is, there are a lot of blindsided people around, and if you want to learn something new, please, keep your mind open.

In other words you say that I should keep my mind open to your ideas. I'm sorry, but instead of just another nickname on the Internet I prefer to learn from real researchers who can justify their opinions in an understandable and reliable manner.

Be well.

-finn

btw_1, as long as I remember, Finland has been a member of the Scandinavian Union.

btw_2, what comes to neurobiology, feel free to be a wiseacre, but don't you dare to try to tell Finns how hot a good sauna should be ;-)

Loobie wrote:I am still exercising, but not like an athlete anymore. If your body won't let you jog because your gait gets "herky jerky" when hot, it is hell on your joints.

Hi Lew,
While trying to remain neutral it seemed to me from the beginning that your situation aligns exactly with what Tony's been trying to say. Exercise is good for MS patients but take it easy to keep the inner heat down because heat might be promoting disability progression and keep it low impact because it seems that a person with MS's joints are even more succeptible to impact than a normal person.....or at least that's what I've gotten out of it.

Bob

In the words of Ed McMahon "You are correct sir". That is what I think as well. I agree with his assessment because it fits the way I'm feeling to a T.

Obviously MS affects everyone differently but my wife can walk me into the ground and if you walk long enough and swing enough other parts, walking fast can be darned good exercise.

On nice summer days here on campus I see a lot of people doing that goofy fast walk the Englisters invented and they all seem to be pretty skinny. Then again that might be a sport that skinny people happen to like and none of them ever were fat.

Me personally? I heard that bicycling was good for you so I bought a little motor scooter. Pedalling a bike involves too much exertion. So far I haven't lost any weight but the scooter gets me to the ice cream shop a lot quicker than a bicycle would!

Bob

I just turned 45 and I have been a dedicated lifter and runner since I was 15. Never had any joint problems and never ran marathons, only daily runs of less than 5 miles. Now, I'm having all kinds of joint problems. My elbow tendons are messed up from lifting and I have an appoint with an Ortho surgeon this month. Since I've had MS one of my biggest problems is spasticity. I think my ligaments and tendons are also stiff and it has caused most of the problems. Along with spasticity, the neuropathic pain in my feet caused me to run with my feet slightly supinated. This not only caused callouses on the outer edge of my feet but also caused my knee ligament and meniscus to function in an improper alignment. The MRI showed ehough damage to indicate possible surgery. If I'm lucky, maybe I'll only need a shot. As is, I'm completely frustrated that for the first time in my adult life I can't run or lift. I'm so thankful that I have been able to work out except for the short breaks when my symptoms were at their worst. Guess I can always look forward to rehab. I may have to adjust my training methods but I am willing to change if it keeps me working out.