This Is MS Multiple Sclerosis Community: Knowledge & Support

For many women, pregnancy offers a time of blessed relief of MS symptoms. This has lead to studies of hormones and MS, and a clinical trial of estrogen in MS patients. But looking at pregnancy from the CCSVI/vascular paradigm, what else can we learn?

When women are pregnant, their blood volume increases dramatically. This sends blood pumping throughout the body.


http://www.medstudents.com.br/ginob/ginob5.htm
After delivery is the time during which many women report having exacerbations, or a return of MS symptoms. Pondering this fact has lead me to do more reading on blood volume, and I am finding some interesting things to consider.

Hypovolemia means low blood volume. This condition can be very serious and happens due to blood loss from injury, but it can also be mild and happens in a body that is dehydrated or is inactive or not functioning well. This happens often to the elderly. Low blood volume can cause orthostatic hypotension. This is when there isn't enough blood getting to the brain when a person changes position, from lying down to upright. This can lead to dizziness, confusion and falls, and often happens in the elderly. But it can happen in people with MS, too. Orthostatic hypotension is well-documented in MS and has been a mystery for researchers. It is thought to be due to autonomic dysfunction.


Thinking about blood volume in terms of CCSVI treatment and restenosis has been very interesting to me. If angioplasty is returning good, open routes of flow, but the body is not able to compensate by providing adequate blood volume, then these opened vessels will not have the necessary pressure to remain opened. And the areas of prior stenosis might re-collapse, just like an old garden hose with low flow.

I hope to bring this avenue of discussion to the doctors. Perhaps aftercare needs to include additional hydration, salt intake, maybe even intravenous fluids--all to keep blood levels adequate. Inactivity and remaining in the supine position increase hypovolemia--therefore, movement, exercise and upright activities would encourage blood flow and blood volume.
http://www.ncbi.nlm.nih.gov/pubmed/20044443
Something to think about as we move forward with CCSVI research in 2011.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

now that makes sence. it will be interesting to see what the doctors thoughts are on this when you bring it up.

got a question. you can tell i am not the articulate one on this site when it comes to big names and stuff but here goes----------what you are saying about keeping the restenosis from happening makes sence. what this has me wondering is for whatever reason the start of ms might be and hydration playing a part in blood flow which we now know plays a big part in ms--i wonder if the fact that most people with ms usually get bladder problems. when i first started getting over active bladder problems naturally i cut back on fluids. it wasn't until the last couple yrs. when started getting uti's that i had to start drinking lots of water to help that. of course it goes in and out so quickly i don't see how i'm keeping what i need in my body. since some are more hydrated than others i wonder if that helps determine how the ms progresses.

you mentioned that possibly salt being added to help hydrate. there were some claiming that they got better from ms consuming a lot of salt and water. but it did not work well for progressive ms. i think if you google something like salt and water cures ms you'll find the reads.

i tried it for a while "maybe not long enough" but my symptoms are progressive.

most have heard to drink plenty of fluids but few probably do even in the world of people that don't have what they call ms. when i was healthy working 6 days a week drinking lots of fluids was the last thing on my mind. not being hydrated properly could have to do with the fact that in colder climates there is more ms so people would probably drink less as in hotter climates you would assume they would drink more. and even with the trend changing where warmer climates people are getting ms more than before- since everyone pretty much spends a lot of their time in air conditioning they are more than likely not getting as thirsty as if they were in heat.

when science gets it figured out and has all the answers it will be great-in the meantime why not ponder?

MS, such a mystery, until you look at it with CCSVI in mind!

Hydration would seem to be an important consideration pre- or post-procedure. But I can't say I fully understand the hemodynamics. If CCVSI malformations are fixed, wouldn't greater blood volume just increase the amount of blood hitting the fixed malformation and needing to reflux and find a different way out? So that greater blood volume would actually increase the amount of reflux?

Cece--
Believe me, I don't claim to understand all of this regarding blood flow and volume...that's why I'm hoping the doctors might have some understanding to offer. Increased blood volume will open up the veins. Perhaps this is why MS is often quiet during pregnancy? Perhaps it might be part of the answer for keeping veins opened after angioplasty. During angioplasty, additional fluids are added to the body via dye and intravenous fluids. Maybe aftercare should included instructions for hydration, electrolytes?

Here's a great resource on blood flow and volume. Some light reading....
http://www.biosbcc.net/doohan/sample/ht ... MAPhtm.htm


Simply by having stenotic veins, blood flow and volume will be decreased. Less flow = less volume. Some more things to consider,
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Very, very true. That's what I've been trying to ask, but didn't have the strength nor will to research, you people are brilliant. Dr. Grozdindki knows this, he always says to me that I should exercise and move, not be static. Not climb a mountain though...
One more thing that I notice now and I've noticed before the liberation. I always had increase in symptoms and relapses on sudden big temperature changes, especially from warm to cold. The cold has always bothered me. Is it that blood vessels shrink in cold just like any other object??
Thnx

Hi All,
Sorry I have been away (my husband had surgery)
I just want to add something to this discussion.
Dr Lee has stated in his papers that the tissue involved is mesenchymal tissue. This tissue type is very responsive to certain hormones. It becomes elastic and pliant. Much like the vaginal and labial changes in pregnancy any mesenchymal tissue would also show these changes.
After the hormone levels fall in post pregnancy/nursing, the tissues become stiffer and less stretchy.
This would be in addition to the effects of various degrees of blood volume and hydration/ dehydration.
Just wanted to add my 2 cents.
Cat
MegansMom

_________________
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-

Internal jugular vein collapsibility related to hypovolemia in critical patients tested by doppler ultrasound in ICU.


http://cat.inist.fr/?aModele=afficheN&cpsidt=22888382

and....hypoperfusion caused by hypovolemia in the elderly can be reversed by physical activity.

http://www.ncbi.nlm.nih.gov/pubmed/20044443

These are not MS patients, these measurements were taken in bed bound or inactive patients. In the hypovolemic elderly, blood volume and perfusion are increased by a physically active lifestyle. And the IJVs will collapse a bit in very ill, stationary ICU patients, due to hypovolemia. Hypovolemia may be a part of the aftercare puzzle for those treated for stenosis. If blood flow and blood volume is not encouraged, there could be re-occlusion.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I think it was in Wheelchair Kamikaze's blog recently that, shockingly and sarcasm-inspiringly, as disability went up, activity levels went down. So this might be of especial importance for those who face challenges with being physically active. Do we have any links for practical exercises that can be done by people in chairs or along those lines? I think Cheer is on to something with this, as usual.

You're so right, Cece...so much of this is heart-breakingly obvious. And Marc nailed it in his blog. It's a horrible, vicious cycle. As the body slows down, disability mounts, and the body slows down even more. Hypovolemia, hypoperfusion and jugular vein collapse happen in the elderly and seriously ill as blood volume and flow decreases. But movement and being upright helps....how can those who have such debilitating paralysis move? It's all about cardiovascular exercise, and getting the heart pumping. And like all things, there is help on the internet. A quick search brought this--
Aerobic exercise for People who use wheelchairs-
http://www.medicine.uiowa.edu/cdd/patie ... ercise.asp

Jeff is going snowshoeing with our son today. He works out everyday, getting his heart pumping. He drinks a ton more water than ever before. He's eating well, has lost weight and totally puts me, his healthy wife, to shame. He's really, really fortunate to be able to move, and he knows it. How long will this last? We have no idea...but his chances of mobility improve with continued cardiovascular exercise.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Which hormones? Do you have links to the papers or any more info pretty please?



http://www.cvphysiology.com/Hemodynamics/H011.htm

I think it is about flow, increased viscosity = resistance to flow. Cooler temps = thicker blood.

This was also interesting to me:



I think some other people here have improvement in symptoms by giving blood. This could be one explanation. They are making themselves anemic and therefore reducing blood viscosity and improving the flow?

From the pregnancy thing Cheer linked to:



So initially you have more blood and it less viscous and as you get toward the end the blood gets thicker.

CCSVI as congenital truncular venous malformations which grow as the body matures by Dr. Lee:
http://fondazionehilarescere.org/pdf/03-2518-ANGY.pdf


link
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Hi Debp, I'm one of the people who's symptoms went away after phlebotomy, and yes I had the thick blood, high Hemocrit, high hemoglobin, high iron saturation when I started to get symptoms. I'm CIS and I developed my brain lesion when my blood was at it's thickest in 2008 and lost use of my right hand.
Using phlebotomy I've managed to get my iron levels down to normal, my hemocrit from 49 down to 45, and my hemoglobin from 163 to 145.
I've got rid of a lot of the fatigue, stiffness and joint pain, but some symptoms do come back in tune with my monthly menstrual cycle in the mid to luteal phase. Hormones definitely have an effect on things.

I find I need to drink a lot of fluids to help keep my hemoglobin down.
I exercise regularly, walking and do quite heavy farm work.

This whole pregnancy thing makes sense. I was so good during my last pregnancy then it got worse after. I did not know that I had MS for a few years later so looking back to that time it all makes sense. Once the pregnancy was over and blood volume decreased my illness got worse. Really good topics to discuss with doctors that's for sure.

thanks again Joan.

All you smart posters on this thread with posts of such high caliber are why cheer comes back to TIMS from her fb page time after time. Don't worry though, Joan, you can keep coming back to TIMS for discussions like these.

lol, HappyPoet, I would say it's the other way around, and Cheer brings some high caliber discussion with her when she comes. I remember when I first was diagnosed, I said that suddenly I found myself having to learn everything about the immune system and everything about neurology and everything about the vascular system because of the blood-brain-barrier breach. Well, of those three, I only really studied up on the first two.

This is Cheer's area of interest, which is why when the Zamboni research landed here, she knew what it meant. She and her husband had enough understanding, intelligence, courage and trust in their doctor to act on it. When I read the thread where her husband was off getting the very first US procedure done and everyone was waiting to hear back, holy moly! How big and how different from our own courageous trips now. We are still pioneers but they built the wagon from scratch.