New Journal Article On Autonomic Dysfunction, Ccsvi, And Ms Link, Very Interesting!

[Clairefmartin]

Here it is, wish I could afford to buy the entire thing!

http://www.sciencedirect.com/science/article/pii/S1568997212000845

Mentions interesting areas of research I have seen discussed on here before.

Claire

[bellgirl]

Thank you Claire...I've been very interested in finding out more about CCSVI, because of my vision problems, vitamin D3 deficiency and MS like symptoms. This article is great. I think I am going to print it for my neurologist. Thanks, Kim

[bellgirl]

I guess I'll have to purchase it

[HopeSprings]

Ok, I read it like 5 times and don't completely get it, but I find it interesting because it mentions so many of the things we've talked about and links them all together. I can't believe even Epstein Barr is mentioned. Can someone explain to me how this researcher is connecting EBV and vitamin D to CCSVl? And maybe tell me in simple terms what CCSVI is? It's just over my head and even harder when you can barely think.

[tinkerbella]

If there is so much of an connection, why is it that our brain MRI's are so different? Just asking, as one of my friends has MS and we are so much alike neuro wise in many ways. In others not at all, and compare the MRI's and she has problems come back and I have none. Although, I can't have contrast, if that means anything that they can't see. Kim, if you buy it can you post it? Wish they had a journal sites made simple for the rest of the world / people who want to understand. I'm with you Naomi, and I think I understand a lot, then I read some thing like that and I don't get it either ~ Okay, any translators here?

Thanks ~

Bellamia ~

[sue1234]

CCSVI is Chronic Cerebrospinal Venous Insufficiency. I had read about it last year, when I was reading up on people that quit sweating(MSers). In essence, they are finding that the veins that drain the head are "kinked" and create a blood flow backup. A couple of years ago, a doctor over in Europe's wife was diagnosed with MS, so he studied and found the odd veins in the neck. He did experimental surgery, and the symptoms cleared up. Since then they had a doctor in California do some trials on the "liberation" technique, and some patients went from being wheelchair-bound to walking and living their life. I found it interesting that the ones that pre-surgery couldn't sweat, began to sweat after surgery. I've followed it some to see what the latest consensus is, and the recent MS research community says it is not the solution to MS. I honestly don't know if they really believe that, or just trying to sway research away from surgery for so many people.

Anyway, it is interesting.

[HopeSprings]

In essence, they are finding that the veins that drain the head are "kinked" and create a blood flow backup.

Ahhh, a nice simple explanation. Now what does epstein barr and Vitamin D have to do with this.

[kjmom]

Wow, this is really interesting to me, considering that I have MS and my daughter has dysautonomia. I don't know what it all means though...

[sue1234]

Not sure exactly what it means, Naomi, but something about low vitamin D lets inflammation happen in the body, and blood vessels, and the flow gets turbulent or something like that. Due to the altered flow, it somehow puts unequal pressure and somehow causes the kink. This is a very crude explanation of what I've read lately on theories on why it kinks.

I'm not so sure though. The first thing I thought of when I had initially read about CCSVI and kinks is, what if they had degeneration of the cervical spine, and literally if the head lowers some due to that, why wouldn't the veins "unstretch" and possibly kink? Just my elementary thought.

Anyway, with the kinked veins, they theorize that as the blood somewhat "backs up" in the brain, that some of the iron is deposited. I may be wrong, but I think that's where they think the white lesions come from with MS.

I think a good brain and cervical neck flow study would be a good idea in us. If we have similarities in flow issues, does that set us up for a more likely MS occurence?

[HopeSprings]

I think a good brain and cervical neck flow study would be a good idea in us.

What is this?

[Anoj]

Wait, so is it saying a vit D defficiency, or vit D as cause?

My holistic doc pounded my low Vitamin d levels into my brain years ago before i had POTS. I blew her off. Now I wish I hadn't!

[Anoj]

It says " infectious agents such as the Epstein-Barr virus and vitamin D3 are able to alter the functions of the autonomic nervous system." sounds like they are saying D is an infectious agent?

[anna]

Is this not part of Dr. Driscoll's theory?! Go to pretty ill.com and you will find all the latest info there.

[bellgirl]

Yes, Anna, this is part of Dr. Driscoll's theory, and I was thrilled to see all of this coming together for me. I have so many questions to ask my neurologist, and now that I have the next available appointment (because of my unequal pupils), whatever that means (it will probably be in September, when It's scheduled), I'm excited at the prospects. Sue, you explained CCSVI so well!! I am thinking that a Spect Scan or a Functional MRI should show all of what this is referring to. I started all of this with a virus 14 years ago, although I don't know if it was Epstein Barre (need to get tested for that, as well), but I had residual weakness and neuritis on my right side for 5 years after it, along with my binocular defect. Any virus causes inflammation, Multiple Sclerosis is considered an autoimmune disease, and all autoimmune diseases include inflammation. Kinked or malformed vessels can also cause inflammation (I have a family history of aneurysm, stroke, hypertension). Vitamin D is actually used in the treatment of MS, because it helps with tremors, weakness, muscle cramps and bone structure. (I am deficient in vitamin D), as are many on this site. Vitamin D is also supposed to play a role in heart disease, hypertension and diabetes to decrease inflammation in the vessels, I'm assuming, from what I have recently read. I have been on high levels of vitamin D for a month now, and I am amazed at the difference it has made in my energy level; I don't have as many pain and aches, I'm not as weak, and I don't have as many muscle cramps or tremors either!! It's not a cure and of course, I am under the care of a physician with my vitamin D intake, and I am not a doctor (but an RN), not diagnosing or treating, but just suggesting that it would be wise to get your Vitamin D levels checked by your doctor

[Clairefmartin]

Ok, I read it like 5 times and don't completely get it, but I find it interesting because it mentions so many of the things we've talked about and links them all together. I can't believe even Epstein Barr is mentioned. Can someone explain to me how this researcher is connecting EBV and vitamin D to CCSVl? And maybe tell me in simple terms what CCSVI is? It's just over my head and even harder when you can barely think.

This was my thought. I was just diagnosed with chronic EBV, and waiting on my Vitamin D results. I have been tested (via non-contrast MRI) so many times for MS, and always negative, but there is so much overlap! Anyways, glad people are trying to put the pieces together.

[HopeSprings]

Claire - what did your Dr. say about the EBV? Did he/she mention early antigen? This was the piece my Dr's found significant. Do they think it has anything to do with your symptoms? I'm still trying to figure out if this actually means something or if it's just a common finding and means nothing.

[shoegal]

I'm confused, but they thought I had MS for 20 years and I have dsyautonomia and maybe Mito, it's so odd to docs and I have eye issues!

[Friedbrain]

Wow, interesting! I emailed a friend to ask her to download it for me. I'd love to read it. I, too, have blood pressure regulation problems, and numerous symptoms that made neuros initially think I had MS. I had MRIs yearly for about three or four years, and all were negative (as were the two lumbar punctures I had initially, when my health first fell apart 9 ys ago). They finally dismissed the possible MS diagnosis and went with the "you're a mystery" diagnosis. I have numerous autoimmune antibodies. I've been on steroids (cortef) for about 8.5 ys; my new endo wants me to go off them and see how I do, whereas my famdoc thinks it's a logical possibility that the cortef has been helping prevent peripheral/central symptoms of inflammation over the years and that going off the cortef (without another anti inflammatory in its place) is a baaaad idea. I reduced the cortef last month, and have been having periodic spells of difficulty urinating (when I was in the hospital during my initial crisis, I couldn't at ALL, so it would...again....seem logical that it's connected). Interesting that others in this group have overlapping (inflammatory/blood pressure regulation/MS-like) symptoms in common.

[issie]

It seems there are issues with cortisol too and our symptoms - so the cortif is probably assisting in that also. Over a year ago I was talking to a pharmacist about aldosterone and florinef and he suggested that maybe cortisol supplementation might be the better option rather then florinef. So, it will be interesting to see how that goes for you. I know though, that some that are on either of the two hormones - have a really hard time trying to get off them - because the adrenals are dependent on them for their levels - they are not producing as much on their own because it's been supplemented for a length of time and they didn't have to produce the right amount. So, it may be hard to get things to re-start on its' own. (Of course, that's if they were producting the right amount to start with. With some illnesses the adrenals are suppressed and that's why there is supplementation to them in the first place.)

Issie