CCSVI - do you think exercise would help?

hlm286 · Post by **hlm286** » Sun Oct 11, 2009 9:55 am

Okay I'm newly diagnosed and immediately started trying to learn all I could about MS and any approaches that may help. At first CCSVI seemed too much to take in (too much info and medical talk makes me feel like my head is going to explode!), but now that it's been awhile, I started looking into what CCSVI actually is and what I immediately noted was that is has something to do with poor blood flow. (I've always had low blood pressure and so this intrigued me). I know exercise helps to increase blood flow and is generally healthy for everyone, but do you think exercise would help improve CCSVI or cause more stress on the poor blood flow? I've started the swank diet immediately after diagnosis and am slowly easing into the BB diet (I also noted that CCSVI blockage can be worsened by saturated fats - interesting noting that CCSVI seems like a relatively new outlook on MS and saturated fat correlation has long been a theory). How many of you use exercise as a form of therapy and do you think it helps?

Thanks!

(It's overwhelming learning about MS!

radeck · Post by **radeck** » Sun Oct 11, 2009 10:49 am

Good question. I don't have answers but guess one should also distinguish between short term and long term effects of exercise?

As far as the short term effects are concerned, interestingly there seem to be different kinds of people with CCSVI/MS, those who do worse/get tired with exercise, those who feel better with exercise, and those in which exercise doesn't seem to have an immediate effect. I'm having a slightly positive immediate effect on symptoms, and don't fatigue at all with exercise. The neurologist tell me this is weird.

To add a question that may be useful, I wonder whether there's a correlation between heat and exercise sensitivity. I.e. do those who feel better after exercise also do better in heat (like I do), and can such a correlation be explained within CCSVI?

As far as long term effects are concerned, I'm guessing that it can't harm to do what we're evolutionarily supposed to, i.e. exert our bodies to some extent.

Jamie · Post by **Jamie** » Sun Oct 11, 2009 11:23 am

It is indeed overwhelming at first, but keep plugging away, if I can help at all let me know.

mrhodes40 · Post by **mrhodes40** » Sun Oct 11, 2009 11:43 am

I think it is a great plan to do low fat diet and also to do exercise as a newly diagnosed person who is interested in the possibility that CCSVI may have something to do with MS. You will support your circulatory system while some of this plays out.

Exercise causes good deep breaths which are helpful to venous circulation as Dr Zamboni refers to the thoracic pump in his papers several times. Exercise os good for endothelium and oxygen delivery too. It is known to benefit MSers as well.

Jamie · Post by **Jamie** » Sun Oct 11, 2009 11:56 am

Deleted.

mrhodes40 · Post by **mrhodes40** » Sun Oct 11, 2009 12:25 pm

I don't know anything except that there will be one sometime, sorry! I am not inside on that one............

skydog · Post by **skydog** » Mon Oct 12, 2009 7:17 am

For me exercise was what kept me going the first couple of years after diagnosis of ppms. The more I could do the better I felt especially the following day. So once a day I would ride a mountain bike up a hill two plus miles coast back down and go for a short .5 mile hike. Now this past year I have had too many crashes and close calls and had to give it up. My unaided walking became impossible but with the help of a homemade walking device I was able to do short hikes. This was working OK but my heat intolerance was getting so bad that I would fatigue easily and struggle to get much out of even a short hike. Now after surgery in June and the restenosis shortly after I have been unable to get much exercise and I truly feel that this is NOT GOOD! My fatigue level is nearing the top of the scale. My hope is that soon I will be retreated with whatever is prescribed by Dr. Dake and if all goes well the fatigue and heat intolerance will diminish and once again allowing me to exercise. The short answer is exercise as much as possible. There are many benefits to any amount of exercise. The mind and body working together is much more than a just physical act. Exercise is good for the mind/body and it all leads to a better cardiovascular system. Peace and Health, Mark

CNClear · Post by **CNClear** » Mon Oct 12, 2009 3:43 pm

I would love to be able to exercise without having my legs feel like they weigh 300 lbs each and feel like tree trunks...although they still look like my same legs (not even a cankle) but even after 10 mins on a starimaster on low would put me out of it for a couple days...swimming doesnt make my legs feel like that...but if i overdo it, I feel like it is a little difficult to get out of the pool, up the ladder. Two years ago, I could get out of the pool while wearing about 40 lbs of SCUBA equipment, with no problem...not any more...

Oh, and has anyone tried the Vibraslim? It's the exercise machine that you stand on and it jiggles you? Some of the NFL teams have them now, as well as, spinal centers and rehab centers have been using them with good results....

Needled · Post by **Needled** » Mon Oct 12, 2009 3:58 pm

CNC, Have you tried a recumbant bike? It works really well for me. I walk as much as I can in the warmer weather, and I always feel better the next day. But once it gets cold out, I'm on the bike inside. It's much better for my back than a regular exercise bike, and it's a lot easier to rest because you can lean back and it's just generally more comfortable and less tiring. And you can experiment and find the right settings for you. If you feel yourself getting tired but still want to do more time, just change the setting. Most sporting goods stores have all different models on display, so you can try them out that way.

CNClear · Post by **CNClear** » Mon Oct 12, 2009 4:41 pm

That's a coincidence, for sure, because I went to ask my husband, Steve, what he thought about that and before I did, he asked me the same thing! (Maybe he's lurking??? Hi Honey...)

How long and how often do you ride and do your legs ever feel really heavy afterward? And if so, for how long? (the last time I did the stairmaster I ended up going in for IV steroids because the heavy tree trunk feeling wasn't going away after 2 days...)

Thanks for the suggestion...

Lisa

Needled · Post by **Needled** » Mon Oct 12, 2009 4:56 pm

Lisa, I do at least a half hour every night during the week. On the weekend, I try to do more just because I have more time. I try hard not to skip it. I used to do it in the morning, but it just took a bit too much time and effort, so I've substituted 20 minutes of stretching in the morning instead. I generally don't walk outside and do the bike on the same day, unless for some reason I have a lot of energy and extra time. The only time that ever happens is an occasional weekend.

My legs really don't feel heavy or bother me afterwards, because I can slow it down, or make it easier to pedal, if I want to. I've learned the hard way not to push it, and I've found the settings that are most comfortable for me. But if you feel like pushing yourself, you can. If not, slow it down. I can feel the difference the next day if I don't do anything, that's for sure.

CNClear · Post by **CNClear** » Mon Oct 12, 2009 5:28 pm

Thanks for the info...we're going to get one!

Lisa

skydog · Post by **skydog** » Mon Oct 12, 2009 7:23 pm

Make sure you get a comfortable seat that fits you. I have one that I can't use because the seat just plain doesn't fit my BUT! Also because of not being able to lift my left leg it makes it hard to keep my feet on the peddle. My mountain bike has toe clips but they wont fit on the stationary. I will be test driving before purchasing a new one. Good luck on the stationary bike shopping and let us know what you find. Thanks, Mark

Needled · Post by **Needled** » Tue Oct 13, 2009 4:47 am

Lisa, Mark has a very good point. Make sure the seat, the back and the leg reach are all comfortable for you. I tried out a lot of different bikes before I bought one, plus I had used one at physical therapy so I had an idea of what I wanted. If I remember, you're near Atlanta? I bought mine at Dick's Sporting Goods. I just checked, and they have stores in Atlanta. Here's the link to their recumbant bikes, just to give you an idea of what's out there. They usually have a decent selection on display, so test all of them! http://www.dickssportinggoods.com/famil ... nt%20bikes

vendredi5h · Post by **vendredi5h** » Sun Oct 18, 2009 9:40 am

Hi there! It's my very first post here. And it's some long doubts concerning MS and bad effects from execice that are bringing me here!

It seems I can link my worst relapses to a physical exercise program I had started more or less soon before. I know that it's a classical phenomenon to try to link relapses to anything in our life, and I'm fully conscious it is most likely unrelated with exercices. But learning about CCSVI, the connections look even more suspect!

Because of blood problem, I had two deep vein thrombosis which left me with venous insufficency in my rigth leg. Looking at what is happening in my calf if I execise without compression stoking, I would definetly dont want the same thing to happen in the brain area! And if there is a reflux without exercising, I cannot see how this reflux is not augmented if the blood flow is doubled.

What do you think guys? Anyone in contact with a CCSVI-aware doctor could ask the question?

Yannick
Quebec, Canada