This Is MS Multiple Sclerosis Community: Knowledge & Support

The idea of CCSVI immediately grabbed me a year or so ago because i've always been suspicious that my problems may be connected with both my neck and my circulation.

My reasoning was this; I have had varicose veins since I was about 10 (i'm 30 now), i've always had a 'corned beef' tone to my skin (when I was born the midwife apparently commented on it), i have never been able to tilt my head back or be turned upside down without seeing red and pretty much passing out, I suffer crippling migraines, and i've never had a lot of energy. In fact my fatigue is horrendous. It's all located very much from my neck upwards.

Now I have been classified as having MS and CFS. I have mobility problems but they're not heinous, the majority of my problems are centred around my neck and head. Since I got seriously ill 10 years ago i've lived in a world of 'derealisation'. I call it this because no one is really sure what it is, and though i've met people who get it, they tend to get it for a few hours. I've had it 24/7 for the last 10 years. It's basically that I don't feel like i'm really alive, I seem to watch the world through a screen and can't connect the fact that my brain is controlling my movements, it's almost as if i'm on auto pilot and in a video game. It's very strange and unsettling. The more ill I get, the worse the detachment gets.

Because of all the above I really do hope the procedure will be especially beneficial to me, I daren't hope too much but quietly i'm aware that it seems to do very well resolving a lot of these problems. So a very big fingers x'd!

I guess my question to others here, did any of you really question your circulation for some reason before finding out about CCSVI? And if so what was the reasoning/symptoms behind your suspicions?

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28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.

Dear Interrupted,

I am but the mom of a pwMS/CCSVI and although she only had symptoms briefly she was at a loss for words to describe the feeling in her head.
She said that she felt similar to "always having a nagging hangover and feeling detached". As I read your words I could hear an echo of similarity. She once said that it was as if her body and mind were not hers and that her thinking process was altered. Now mind you she only had this for a very short time and and since it was recent she got tested diagnosed and treated. Lucky her. All of her symptoms went away.

I have been a nurse formany years and I heard similar complaints from patients that had a cardiac arrest and were revived. The doctors called it anoxic encephalopathy- not enough oxygen to the brain. Patients with this varied of course depending on how long they were without oxygen and if they had arrested outside the hospital. Most of them acted like they were in a "fog". Complained of not feeling "right in the head" and disconnected.

Fortunately most of these folks over a brief time ( days to weeks ) improved and the feelings went away. I am wondering if the mild hypoxemia caused by a turbulent course of the "used" deoxygenated blood mixing with the oxygen rich blood perhaps makes one suffer from a hypoxemia thats borderline...causing headaches, and vertigo and these other "feelings". This, the hypoxemia, was demonstrated recently when one of the researchers did blood gases above and below the stenosis.

Of course we can not ignore the iron too but the oxygen would certainly be something that once the pipes are open would cause improvement of such symptoms.

I pray that you get such relief. Best of luck.

Cat

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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-

What a fascinating post Cat! No one has ever been close to being able to potentially explain what I struggle with but i'm glad to hear you echo my feelings (with much more knowledge) as to what the cause might be. Thank you so much, it brings me great hope!

When you say your daughter was treated, I assume you mean via the CCSVI procedure? xxx

_________________
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.

This is pretty much my life. I haven't come across anyone who describes it this way but this is exactly how I explain it to everyone around me. It's like a terrible hangover that never goes away...no matter how much I drink...believe me, I've tried!!

For years now I have had thoughts that circulation was my biggest problem. I have also had varicose veins since I was about 16, my legs fall asleep at the drop of a hat, headaches, chest pains quite often, along with the dizziness/lightheadedness (hangover sensation) it seems to me that something has to be going on with my circulation. I have expressed this to my doctor but he hasn't really done any follow up besides the normal blood tests...i.e. no referral to a vascular doctor. I think I might try getting a referral as my next step...just to get checked out, not as an MS patient, but just as a person with some circulatory issues, and see how that goes.

Not that i want others to feel how I do but it is nice to know there are people out there experiencing the exact same symptoms that I am.

Thanks for posting.

Yes, when I say she was treated I meant that she had her angioplasty.

She was diagnosed in mid August (she had symptoms since late June/early July.) She had 2 MRI lesions, a host of symptoms (fatigue, headache,electric sensations down her arms,facial weakness and some cognitive impairments) and positive Lumbar Puncture for oligoclonal bodies- so technically she had CIS- Clinical Isolated Syndrome. According to the McDonald criteria for MS she would have to have 2 events 30 days apart. We weren't waiting for the second event..........

On September 21st she had the angioplasty at Shands Hospital University of Florida at Gainesville.

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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-

Cat: If this were the case, do you know why my oxgen levels are always deemed fine? Even when having a very strong upleasant incident where I was skirting blacking out and feeling like I was having a stroke (I wasn't, they've no idea what it was) they've been judged fine by the paramedics

Kleiner: You are definitely not alone x

_________________
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.

I have also felt that my issues were not just nerve related but also blood flow.
I have had only 3 flare ups in 30 years (and have not gotten over this last one that came over a year ago) and while looking back at my notes from the one 16 years prior, I even mention feeling like I have blood pressure cuffs on that comes and goes. Mostly around my forearms down to my finger tips and sometimes even around my neck. I have these feelings again this time. I also get lots of migraines and lots of pressure behind the eyes.
I have many other symptoms but those definately have made me feel that blood flow was somehow involved.
I did have the procedure in Bulgaria but have re-steonsed according to a doppler I recently had. A blood flow improvement I noticed in the short time after my procedure was not being cold all the time. (like when going in a restaurant, I wouldn't need to bring in extra clothing)
I am now trying to decide which direction to go.
Kathy

I have that one too sometimes. It feels like a tourniquet on my left arm, just above the bicep.

Dear Interrupted:
You had a peripheral blood draw for the oxygen measurement. And in the body the blood oxygen level would most likely be normal. In the brain Oxygen ( and glucose & hormones , etc ) comes in through the arteries, arterioles and into the capillaries that feed the brain cells (axons & other types of supportive cells)The brain cells send signals during "thinking" that demand more of the things that they need (Hubbard describes this as part of his fMRI experiments) Then the brain "uses" the oxygen, glucose and other things to power the cell activity and then CO2 and other waste products of cell metabolism are excreted though capillary venules into veins, and here's where it gets trick------

1.In a normal ( non-CCSVI )brain it goes back to the right heart and to the lungs ( where CO2 is exchanged for O2) and to left heart and back into the other parts of the body ( all organs and cells) via the Aorta- at the same time the digested food puts glucose simultaneously put into circulation. Of course we have other things occuring in other places such as hormones from glands, and wastes being filtered in the kidneys and liver.

OR
2.In the CCSVI person the brain venules drain into veins and there are a few blockages or partial blockages ( the body can normally handle a small blockage- the CCSVI seems to occur when 1 or more blockages occur- So reflux occurs ( blood flow going the wrong direction) this causes turbulance in the flow and blood taking "alternate routes" In the mix that this causes the blood would be lower in oxygen, and glucose too.

So instead of IN and OUT - it goes IN and tries to exit - the normal routes(more than 2 are impaired bysomething) and the blood gets re-routed taking longer than normal too- the longer this takes and the more the blockage the worse the problem. Also the location of the blockages seem very relevent too and may involved the spinal cord.
Once the deoxygenated blood gets back to the heart it goes to the lung and gets Oxygen and this is pumped all over- they test the wrist vein ( or artery depending on the test)and would get a "normal value"- To know the brain oxygen vs the peripheral oxygen they would have to test both areas at about the same time.

So you can very well have a lower than normal brain oxygen level compared to the rest of your body due to blockages in the neck

In some liver diseases a similar cause of malfunction was recorded- I believe Budd Chiari is a venous malformation like a web in the portal(liver) vein and it causes liver malfunction because the liver blood can not empty the normal way and has to find alternate routes.

This same rational would be the reason that you could have a normal serum iron ( circulating iron) or even low (anemia) and still have an elevated Brain iron. There have been 2 theories on the cause of the increased iron-maybe even more. Bahkri (Harvard) and Zamboni (Ferrara) have done papers proving this higher than normal brain iron, this is echoed with the SWI type MRI scans that measure brain iron.

The symptoms of MS must come from multiple malfunction of the brain due to these conditions- lower than normal oxygen, lower than normal glucose, higher than normal brain iron, maybe iron oxidation and release of free radicals, maybe axons short circuiting do to the metal , damaged endothelium, damaged myelin and axons And then add in a few things that change like hydration, position( depending on where your blockages are), hormones of pregnancy ( hormones change veins and blood volume positively), vasodilators ( foods and meds)and vaso constrictors ( caffeine and smoking are bad) , plus a host of other regulators such as the glands located in th brain and you can see how it gets quite complicated.

But honestly, be hope filled- they will make many strides fast once the whole CCSVI vein part -debate gets accepted - after the present clinical trials come out. Once they get more people on board the other things will be examined and sorted out. Its very exciting and I am very hopeful for the future of MS treatment.

Hope this helps explain some of what you are experiencing and help you understand some of the theorized mechanisms.

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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-

I know that car (or sports) analogies don't always go over well but the fluid dynamics involved in delivering oxygen and fuel to a turbo engine are the same as delivering fuel and oxygen to the brain.

http://www.thisisms.com/ftopict-14025.html

It is well known that any restriction downstream in the exhaust of the FI engine will impair the volumetric efficiency (VE) of the engine, thus cutting power. Yet, the air fuel mixture and the charge pressure will be the same restriction or no restriction.

Likewise, your blood O2 levels, nutrient load and arterial blood pressure can all be completely normal if you have an occlusion in your jugulars (the brain's exhaust pipes) but it will impair the brain's VE and thus cause symptoms associated with lack of oxygenated fuel - dizziness, fugue, and fog.

Open up your brain's exhaust pipes and the problem should be solved.

Thanks Jugular for the analogy and for the most part it does hold up..... however there are a few other things in the human that are different.....every cell in the brain needs the fuel ( blood rich in O2 and glucose, etc) and that their are probably 3-4 times the veins as arteries, so the veins try to re-route and then throw in the immune system and CSF., geez....... its very complicated to say the least.

But hey....it explains the symptoms and that what the initial post wanted to know.

Thanks so much.

PS:

My analogy would have been a washing machine that never drains off all the dirty soapy water, just some of it........ not nearly as good of an analogy as yours.

_________________
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-

Thanks MM!

I think the engine model works well to explain why fatigue and brain fog might be instantly relieved by liberation treatment, but not how CCSVI can cause demyelination. If I were a mechanic, I'd simply rub my sruffy beard and say "it seems your blocked exhaust has also somehow buggered up your wiring."

I would just love it if some reknowned Interventional Radiologist speaking at some hoity-toity meeting at a zsa zsa hotel said just that
to a big group of neurologists !

I would just cackle !

"It seems your blocked exhaust has also somehow buggered up your wiring."

_________________
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-

An amazingly detailed post MM, thank you very much
Makes more sense for sure. Keeping my fingers crossed it doesn't happen again in Poland next week, but if it does at least i'll have a clue what's going on!

Very much appreciated, you're a star! xoxoxo

_________________
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.