How to Understand Remission in CCSVI

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

How to Understand Remission in CCSVI

Postby cheerleader » Fri May 15, 2009 6:49 am

One issue that people and doctors have alluded to in the CCSVI discussion as a proof that MS cannot be vascular , is the relapsing/remitting nature of MS. How can we understand exacerbations, flares and remission within this paradigm?

I wanted to start a thread to try and ferret out some research to understand this facet of MS.

This first post is just some rambling thoughts...but we'll get the science going.

One thing that I keep coming back to is the unique and personal pattern every MS patient has- people connect different experiences with their diagnosis.... Jimmy remembers being OK until a Hep B vaccine, Jeff was doing OK until a trip to Salt Lake City (high alt) and stress, Lars was fine until a high altitude trek and illness, fill in your own story here....What brought you into the doctor's office, into the MRI tube, and to an MS diagnosis?

I'll bet it was some sort of vasoconstricting event. Something that disrupted the nitric oxide in the blood vessels. Virus, low oxygen, bacterial infection, cortisol, giving birth.

My guess is that every MS patient is born with venous stenosis and that the body is able to work around the area of impaired drainage with some success, until WHAM! There is an event that completely blocks off return of blood to heart at that weak point, and the cycle of perfusion, hypoxia and immune activation is started. A few days/weeks after, the MS patient has what we call an exacerbation.

When the nitric oxide in the blood vessels returns to stasis, the blockage opens up a bit (but with damage done to the CNS, lesion formation, and a thickening of the vein wall due to inflammation) and the MS patient has some "remission." Repeat this over several years, and the MS converts to progressive, when the veins are tougher, less able to open back up, and the damage in the brain and spine has accumulated.

thoughts? Personal stories? Science?
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Fri May 15, 2009 7:15 am

I like the thoughts. They make sense to me too, but I'm not very versed in how the vasodilation works. At any rate, I wanted to tell you my first event and see if you think it could have been a 'vasodilation type scenario'.

I was playing in a racquetball tournament. Tournament racquetball is pretty strenuous as opposed to just playing on Sunday morning at the Y. So I think the constant straining and over exerting may have contributed? The reason I put the question mark in there is that in this scenario, my heart rate was obviously way up, and had been for years from playing almost daily and training. This makes me think that I probably was doing something that opened up the blood flow. But then again, that could be what it does artereially. I don't know if I'm right on that or not since you had said straining is bad. Well I was straining on an almost nightly basis for years up to that point. A whole group of us decided we were going to try and get good and we played all the damn time.

Now my ON flare that was my first symptom didn't happen when the tourney was done, it happened right then and there with no pre warning. I often read how people "looking back" saw some signs, like they were headachy for instance. I felt GREAT right up my first ON attack. The only adverse health thing I was dealing with during my entire adult life up to that point was that I felt low blood sugary very easy. If I didn't have food in me, I would get weak and wobbly a lot during all that training and had low blood sugar stuff going on all the time. I could make it go away by eating though, so I don't know if it was connected in any way to the other stuff. It's funny though, I can't recall the last time I actually felt that way. I imagine it's because my caloric burn rate is so much less.
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Postby cheerleader » Fri May 15, 2009 8:44 am

Thanks for sharing that, Lew.
Must have freaked you out to have your vision go out that first time.
Yeah, this would be contrary to vasoconstriction/flare model, because aerobic exercise is considered a dilator, but you're right about the arteries opening vs. the veins. Maybe the increased output of blood by your heart couldn't be handled by blocked veins? Seems like your first flare was brought on by overheating and nerve transmission interruption in the optic nerve. Will be interesting to see if/where your blockage is.

Since Jeff's surgery, he has been famished! He's eating more, but hasn't put on any weight yet. I wonder if that correlation you made between improved circulation and higher caloric need is part of it....hmmm.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby sou » Fri May 15, 2009 9:14 am

Very interesting, cheer.

Here is a brief history of my time :-)

I developed a tumor at the base of my neck, being 7 years old. Had a series of tests for cancer. All came up clear. My doctor didn't want to look more into it, since it was not malignant. His opinion was that it could be some vein that for some reason got swollen. The tumor went away gradually, and it was completely gone when I got 20. However, the right side of my neck doesn't feel normal, even today, 23 years after the fact.

My first relapse, an episode of double vision, on the most stressful period of my life: changing schools when 11.

Some problems with my leg during the examination period for going to university.

Optic neuritis when girlfriend left for Athens.

Numbness all over my body, when I first started working and spent 8-10 hours without eating anything and being stressed about my ability to cope with the high demands. That was when I got diagnosed. A couple of months later, I got ON, perhaps because of the stress of the diagnosis?

Issues with spasticity when my cousin was diagnosed with cancer. She lived with us, because she couldn't get treatment where her home was.

Terrible spasticity after benzene poisoning, stress, bad eating, constant lack of time and over-exhaustion, working or studying 12-14 hours a day. 10 people where I worked from went to hospital within a week:

Me: MS relapse
1: Psoriasis relapse
3-4: Breathing issues
4-5: Nauseated

I hope this helps!

sou
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Postby cheerleader » Fri May 15, 2009 3:33 pm

sou wrote:Very interesting, cheer.

Here is a brief history of my time :-)

I developed a tumor at the base of my neck, being 7 years old. Had a series of tests for cancer. All came up clear. My doctor didn't want to look more into it, since it was not malignant. His opinion was that it could be some vein that for some reason got swollen. The tumor went away gradually, and it was completely gone when I got 20. However, the right side of my neck doesn't feel normal, even today, 23 years after the fact.
sou


sou...when is your venography? I think you know where to look! "A vein that for some reason got swollen"?? Get that right jugular scanned, young man-
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Postby mrhodes40 » Fri May 15, 2009 3:43 pm

My personal orgianal event was illness: I got cold sores for the first time and it made me very ill high fever etc x a week...

when I got out of that bed the end of the ewek I had severe spasticity couldn't bend anything fom the waist down when I was trying to walk, so I walked like stick person.

This event occured after a terrible heartbreaking event and I was severely stressed.

I believe that the situation represents several things;

1. severe stress results in fight or flight activation of the sympathetic nervous system, which means tht my body was ready for a fight with, say, a tiger and possible injury--hence the coagulation and inflammation cascades are upregulated to stop bleeding quickly when that happens.

2. Stress results in a very different breathing pattern shallow breaths off the top lobes and no good deep really cleansing breaths. This impairs the thoracic pump and reduced venous return. Part of our venous return is the negative pressure in the chest "pulling" the venous blood through (see Zamboni's papers for references).

The combination in addition to a viral load that had a high fever -104!- meant I was ripe for issues..............

Bingo, first MS event.

I have wondered if people might have events as a result of effort too. The valsalva maneuver is known to cause reflux even in some "normal" adults. THe vm is when you hold your breath and strain for anything--constipation causes it but it also can be any other thing that mkaes you do that ...life the couch to vacuum underneath, you name it.

I wondered if people might have a small enugh stenosis that most of the time they are fine but once in a while this kind of thing happens, blood leaks, inflammaiton kicks in and a little while later they have an exacerbation.

These may combine, say at the holidays stress + big cleaning effort as you get ready.

Interestingly allergies cause activation of the inflammation cascade obviously and that triggers some coagulation activation in some people as a side effect (that is they type of coagulation problem I have), so might the person with a stenosis get a little extra plugged up in the spring and fall if they are allergic??

just thoughts.
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Postby chrishasms » Fri May 15, 2009 4:43 pm

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Last edited by chrishasms on Sun Dec 06, 2009 12:09 pm, edited 1 time in total.
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Postby cheerleader » Fri May 15, 2009 5:44 pm

mrhodes40 wrote:
Interestingly allergies cause activation of the inflammation cascade obviously and that triggers some coagulation activation in some people as a side effect (that is they type of coagulation problem I have), so might the person with a stenosis get a little extra plugged up in the spring and fall if they are allergic?
marie


Very interesting tie in of allergies and coagulation activation, Marie! That would explain seasonal MS flares for allergy sufferers. Were your allergies acting up this week?
And moving to Colorado and having lower oxygen levels seems to be the straw that stops up the veins for many, Chris.
See how unique every story is??? No wonder MS has been such a mystery for so long.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby LR1234 » Sat May 16, 2009 1:29 am

I had a minor operation with general anasethic. They for some reason whilst under GA gave me an epidural. I woke up at the end of the operation (in the recovery room)with no oxygen mask and gasping for air...the nurses ran over to me and stuck a mask on my face....I have no idea how long I was having problems breathing for. Then over the next couple of days the epidural did not wear off and I was bedridden and thought my legs were never going to come back. When they finally did I was able to go home but I was never well again after that point.....constant fatigue, numbness, visual probs and got progressively worse slowly with minor excerbations until recently when the minor attacks turned into more severe attacks.
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Postby cheerleader » Sat May 16, 2009 10:53 am

Marie...good point-
I have wondered if people might have events as a result of effort too. The valsalva maneuver is known to cause reflux even in some "normal" adults. THe vm is when you hold your breath and strain for anything--constipation causes it but it also can be any other thing that mkaes you do that ...life the couch to vacuum underneath, you name it.


If I remember correctly, giving birth was a mighty big valsalva maneuver!

And LR, wow! That experience would certainly have changed the nitric oxide balance in your veins and caused further constriction. Many MSers refer to anesthetics as a cause of exacerbations.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Sat May 16, 2009 11:25 am

I just thought of something that I didn't add from my early diagnosis days. The first guy that saw me was an opthamologist; not a neuro-optho, just and optho. At any rate, his initial thoughts were that I had "exercise induced ocular ischemia". And he was worried about my jugulars. I just remembered that as I was stressing out over my thoughts about how exercise would have an opposite effect from vasoconstriction. Don't know if it means anything, but maybe when I'm out there if I'm the only one that doesn't show anything (why do I think like that?) I'll have him let me get hot and sweaty and see if it changes anything. After that, the neuro-optho actually had me come in in my running gear and go run a mile before visual fields because I kept going in his meat locker office and getting "everything is fine". Well it wasn't after that because he did see an inflamed optic nerve after I exercised and then it was off to the neuro.
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Postby cheerleader » Sat May 16, 2009 12:10 pm

Loobie wrote:I just thought of something that I didn't add from my early diagnosis days. The first guy that saw me was an opthamologist; not a neuro-optho, just and optho. At any rate, his initial thoughts were that I had "exercise induced ocular ischemia". And he was worried about my jugulars.


Man, you had a smart opthamologist, Lew. Sure, if your venous return is blocked in your jugular(s) you can suffer from ocular iscemia or venous stasis retinopathy due to congestion..even before the immune system is activated to go after the optic nerve. You don't need demyelination to have this. And exercise was the connection for you. Wow.

Opthamologists will be on the front line of diagnosis, if they refer patients for an MRV at fist sign of venous congestion. Think of the years of pain and suffering that people will be spared...

I didn't think Jeff was going to show blockage, either. Everyone thinks they'll be the first MSer without stenosis....but there hasn't been one yet!
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby peekaboo » Sat May 16, 2009 12:38 pm

I didn't think Jeff was going to show blockage, either. Everyone thinks they'll be the first MSer without stenosis....but there hasn't been one yet!
cheer

isn't it crazy to wish we had stenosis? irony

H

BTW my ms started after a servere UT infection...102 temp shakes all that good stuff...
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Postby Loobie » Sat May 16, 2009 12:50 pm

There's a little back story to that particular opthamologist. I had never went to him, but I'm a DO guy and my DO family doctor recommended him. Well he was what I would call uber-active. He was a doctor with a booming practice, a marathon runner, AND he founded an organization, and was very active in it, that played matchmaker between American families who wanted to adopt and organizations in Russia and the Ukraine, and he had a whole pile of kids; like 6 or 7.

Well he was very well liked and respected and everyone thought he really had his stuff together. He was this little oriental guy that everyone really loved. One day I was reading the paper and he had taken his car out into the middle of a farmfield in a rural area around here and blew his brains out with a 12 gauge. Now that doesn't have anything to do with anything regarding this topic, but posting about that incident just brought back thoughts of him.
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Postby zap » Mon May 18, 2009 8:12 am

Huh.

I don't think this is where it began, but I have always thought my first significant episode was started by a mushroom trip.

I remember feeling lousy (very much not the usual experience with mushrooms) and trying to take a hot shower to feel better - instead it made me feel awful and weak, and when I got stepped out I almost fainted, fell to the floor on my butt, and watched in a rather detached way as my legs thrummed up and down a little on the floor, seizure-style. This is NOT something that mushrooms normally does to people, and I couldn't make much sense of it, but in the aftermath of that trip I was depressed, anxious, spaced out, totally messed up for days, yawning constantly (I later found out I had a large lesion on my pons, and that the yawning is a common symptom of pontine lesions), etc.

I could never figure out any possible connection when I was looking purely from the auto-immune angle, but now it makes more sense - psilocybin (the active ingredient in magic mushrooms) is a vasoconstrictor.

Hmmm, and now that I think about it, with my allergies as a kid I was on a ton of various antihistamines, many of which are also vasoconstrictors.

And oh, crap - so is cannabis ... which is why both pot and psilocybin are used to treat migranes and cluster headaches ...

I'm definitely going to pay attention to what vasoconstrictors I come into contact with, an minimize their combination where I can't or won't rule them out entirely.


PS - there simply HAS to be a way to modify the song/rhyme to work for CCVI - "the brain that drains flows mainly in the veins" or "the veins that drain must flow freely from the brain" ... somehow it's gotta work, it comes to mind everytime I find myself typing about the veins that drain the brain lol
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