This Is MS Multiple Sclerosis Knowledge & Support Community

Cece, I think you might have misunderstood my post, but it's still all good...

As cheer knows, in threads just like this one, I often ask her, in many ways, to keep coming back because we need her -- this post was simply another such attempt while at the same time acknowledging the very deserving posters here at TIMS.

I want TIMS to be the best it can possibly be for all of us. In my case, I had two valvuloplasties that didn't help, and I'd like to learn why not. In addition, I need to keep current with research on intimal hypoplasia because, as I understand the process, it could start happening at anytime in the first year after one's venoplasty procedure. I also want to know what new findings might be able to help all of us, like better understanding of this topic, for instance.

For all these reasons and more, I want TIMS to be the best it can be, with riffraff gone and with cheer's research posts filling up page one again. The new TIMS' policy on moderation is working and being enforced with the banishment of Malden and disrespectful posts being removed. Now all we need is cheer back.

Just think of the fantastic possibilities that can now happen with harmony here at TIMS which had too often been like an orchestra without its conductor. Imagine what could happen if we could have our conductor back.

Cheer, we still need you. Very much. And hopefully Cece's very eloquent, impassioned post will help you decide to come here more often.

It just came to my mind that the easiest way to induce hypovolemia is to expose your body to heat. The physiological response is to dilate the peripheral blood vessel to exchange heat with the outside. This results in decrease flow to the central organs.
The opposite is true for cold exposure when the peripheral blood vessel constrict and the flow is shifted to the central organs. Since people with MS, including me, feel worse symptoms in heat, this would be consistent with CCSVI. Of course the neurologist will tell you that it is because heat slow down the nerve conduction.
The answer would be if patients treated with venoplasty report a decrease in their heat sensitivity.

Nunzio wrote:It just came to my mind that the easiest way to induce hypovolemia is to expose your body to heat. The physiological response is to dilate the peripheral blood vessel to exchange heat with the outside. This results in decrease flow to the central organs.
The opposite is true for cold exposure when the peripheral blood vessel constrict and the flow is shifted to the central organs. Since people with MS, including me, feel worse symptoms in heat, this would be consistent with CCSVI. Of course the neurologist will tell you that it is because heat slow down the nerve conduction.
The answer would be if patients treated with venoplasty report a decrease in their heat sensitivity.

This is a great point, Nunzio! Yes, heat and exercise increase blood volume--cold and inactivity reduce it. Sadly, most pwMS cannot get too hot, or exercise, due to their disease. This hypovolemic-hypoperfusion situation seems to be a vicious cycle.

Jeff's heat intolerance was completely removed with angioplasty. He can now soak in a hot tub or bath and mountain bikes and exercises in 90 deg temps. He sweats again, and is not made tired by heat. He also hydrates more. It's been a cycle of healing for him. This has been reported by many RRMS patients. We've discussed why heat intolerance is affected on here many times. Marie and the docs believe it is due to relief and better flow in the veins which control the body's temp. regulation of the brain. But it may also be due to increased blood volume.

There are two routes available to the cool venous blood returning from the nasal mucosa. One is via the angularis oculi vein; if this route is taken, the arterial blood flowing to the brain will be cooled and SBC will ensue. The other route goes via the facial vein straight back to the jugular vein, in which case the cavernous sinus is bypassed and the brain is not cooled.

http://physiologyonline.physiology.org/ ... 6/281.full

Thanks, Cece and Poet, for the kind words. I check in once and awhile on here...still lots of good conversations, and lots more to learn.
cheer

While gains (cogfog/fatigue elimination) were lost a week after balloon angio, I remained free from heat sensitivity for 2 months after treatment. I wonder why that was?

PN

This hypovolemia is very interesting, and makes sense. Still makes me wonder about wife's good results with weight training..

Ernst,

While my aerobic workout (bike) has suffered in past months due to fatigue, I've been able to continue my weightlifing (anaerobic).

PN

PointsNorth wrote:Ernst,

While my aerobic workout (bike) has suffered in past months due to fatigue, I've been able to continue my weightlifing (anaerobic).

PN

Points---I'm hoping you have an ongoing relationship with a GP or vascular doctor, to keep an eye on your coagulation numbers and venous flow. Aftercare is essential. Jeff just had his fifth checkup at Stanford.

Also, recovery can be a two steps-ahead, one back process. Make sure to drink lots of water when lifting, to prevent hypovolemia, and don't strain or breath hold (valsalva manuever isn't great for flow.)
take care--
cheer

Nunzio wrote:It just came to my mind that the easiest way to induce hypovolemia is to expose your body to heat. The physiological response is to dilate the peripheral blood vessel to exchange heat with the outside. This results in decrease flow to the central organs.
The opposite is true for cold exposure when the peripheral blood vessel constrict and the flow is shifted to the central organs. Since people with MS, including me, feel worse symptoms in heat, this would be consistent with CCSVI. Of course the neurologist will tell you that it is because heat slow down the nerve conduction.
The answer would be if patients treated with venoplasty report a decrease in their heat sensitivity.

This is a fantastic theory on the heat intolerance. Best I've heard yet.

cheerleader wrote: Also, recovery can be a two steps-ahead, one back process. Make sure to drink lots of water when lifting, to prevent hypovolemia, and don't strain or breath hold (valsalva manuever isn't great for flow.)
take care--
cheer

Hello Cheer,

I've been reading research data about weight training and multiple sclerosis, and it's quite interesting and encouraging:

Florida University:
http://news.ufl.edu/2005/01/13/msexercise/

and new study from Denmark:
http://www.ncbi.nlm.nih.gov/pubmed/20194584


When doing weight training, the central vein pressure is something which comes with exercises (for example squat) which widen the veins. Breathing is important when exercising, for ex.in squat usually inhale when movement down, exhale when pushing up.
I know some people with MS and they are doing quite serious weight training and both are doing extremely good, no MS symtoms. Still wondering that is is partly due to circulation/venous system? My wife had incredibly good results after leg exercise, feet/hands became warm again and got energylevels high again. This is really interesting. We have now aerobic and unaerobic exerices in program. Training is so wonderful

Very good point that drinking water, have to remind her about it. You have wonderful ideas Cheer. Take care and be strong.

Ernst wrote: When doing weight training, the central vein pressure is something which comes with exercises (for example squat) which widen the veins. Breathing is important when exercising, for ex.in squat usually inhale when movement down, exhale when pushing up.
Very good point that drinking water, have to remind her about it. You have wonderful ideas Cheer. Take care and be strong.

So glad to hear your wife is doing well, Ernst. That's the best news. I don't know all the specifics on weight training, but your point makes sense...blood is needed to feed the muscles, circulation is increased, veins are widened with exertion, the endothelium becomes stronger, less permeable. All good!

Here's a great calculator to tell you your daily water/liquid needs in ounces. Mine was 91 ounces yesterday!! Most of us don't drink nearly enough H2O. I know I feel better and more energized when I get enough. Jeff says the same.
http://nutrition.about.com/library/blwa ... ulator.htm
cheer

Thank you Cheer,

I also noticed that I drink too little H2O, so this is something important to take care of. I have noticed that some of my co-workers have waterbottle with them.. and drink water all the time. Gonna read more about this, very good tip.

ps. one more point of weight training - it is huge nerve stimulus to brain. I wonder what would fMRI show when training weights?

Here's some interesting research to show that as the body ages, the thirst mechanism slows down as well, leading to hypovolemic states in the elderly. This causes confusion, falls, dizziness.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1413909/

Thirst is not an adequate indicator of the body's fluid needs, which are about 60-90 ounces a day depending on weight and activity levels.

Make yourself drink a glass of water first thing in the morning and whenever you walk by the tap. Keep a glass right there. Carry a water bottle (BPA plastic free) in the car. Keep a pitcher of water with lemon in the fridge. Stick post it notes around to remind yourself. Blood is 90% H2O. Keep those red cells plumped up!
cheer

Happy new year everyone. I have been thinking that the blood volumes and flow could be a link to the way some are having eureka benefit from angio treatments. If the blood flow improves after angio and symptoms improve, is it possible that the same is happening when PwMS donate blood. The volume change and bodies responses to producing blood quickly?
There is something connecting the phlebotomy, pregnancy, blood temp/body temp, blood volume and activity (association).
I wonder if the phlebotomy and 30% of angio treated PwMS having improvements immediately have a connection due to the link between flow and volume? (viscosity possibly as well). Could be an interesting trial.

Cece wrote:We are still pioneers but they built the wagon from scratch.

O heavens. You have to get up pretty early to keep up with all of the good metaphor around here...

But to get technical again: I started a discussion elsewhere that was to include some of the physics of blood: hematocrit is a key player; I do believe that "thickness" or viscosity, which is very temperature-dependent, in a non-linear way, has a great effect. I have talked about the temperature "knee" I find in the air/water temperature: in me, anyway, it is so marked that it seems a prime factor. Volume we now see also can affect things. One of the diseases that is often misdiagnosed as 'MS' has a characteristic thickening of the blood. That's why I think volume is not the whole answer. We cannot achieve good flow by thinning blood with water. The red blood cells affect shear and turbulence in a very critical way: that is a reason hematocrit is important. If the blood is too thin, more perfusion can't take place because of not enough red cells. We want good flow, but I think temperature and viscosity can produce or prevent reflux. I also think that is one of the reasons diet/fat intake are so important (he said as he scarfed another candy-cane). And why pregnancy can help: not just more blood, but more good, red, just the right viscosity, well-temperature controlled blood.

Speaking of temperature control, loss of this could be another vicious cycle: if you can't cool yourself because your thermometer is messed up, won't you have thinner blood, maybe more prone to reflux?

NZer1, I can't see that it is anything else! I first discovered the instant benefits after a large blood test. My fatigue had got so bad that I went back to the GP and she ordered the big test. Within 3 hours I felt the best I had in decades. No fatigue, light and springy. it was like a miracle for me. It reversed after five days, hit me like a brick, so of course I run back to the GP and ask for more! That's when my trouble started, Dr. treated me like I was insane. Found this website and here I am.
The CCSVI thread rang with me as the results were so instant in some cases. The fatigue and heaviness were gone.

I went and donated blood the following week 500mls. Same result, but with the large amount taken it lasted 5 weeks. I believe it takes about that length to totally restore the equilibrium after a blood donation. But each time I did this I got a bit better. I've donated every 3-4 months since.

I'm in a good place now. I can happily say I have not had to collapse on the couch in the afternoon for the past 12 days in a row, a record for me I think. My stiff sore joints are taking longer to relieve, but are also much much better. I'll just plod on, and keep my blood levels right using phlebotomy if my hemoglobin or iron levels start to rise. Drinking heaps of water is very important, I do no cardiovascular workouts, just walking, lots of it hilly, and a lot of slow heavy outdoor work, planting trees, chopping wood etc.

I think the link may be polycythemia. Secondary polycythemia is linked to smoking, amonst other things, lack of oxygen in the blood causing over production from marrow to compensate. Treatment is phlebotomy, relief from symptoms can be immediate, I've read case histories where the patient very sick in hospital feels "20 years younger" after phlebotomy treatment.