neuro comments

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

neuro comments

Postby kirch86 » Wed Mar 10, 2010 11:27 pm

Hello all, This is my first post on this site, however I have been doing lots of reading on here and check it daily. My fiance (She is 21yrs old I am 24yrs old) was diagnosed with MS about a month ago. A little background info on her, She was diagnosed with Celiac disease around thanksgiving, As soon as she started feeling better from getting the celiac diseas under control she started getting really dizzy, She kept getting told it was just vertigo, It got really bad one day and we brought her to er, They did a ct scan and it showed a spot so we got refered to a neuro. They did a brain mri and were told she had had a stroke at some point. She started loosing the feeling in her feet and hands and it has worked its way up to the torso and now she can't feel her feet at all and has numbness up both legs arms and her belly, He kept saying all she has was vertigo and the stroke was unrelated, we went and got a 2nd opnion. The 2nd neuro found the MS and we really like her a lot. We went for our first followup since being diagnosed with ms and we decided on meds today. Copaxone. I asked her her thoughts on CCSVI, I have done a lot of reading and didn't expect her to have positive ideas about it, but I was interested in what she had to say. She had heard about it and she gave the response I expected. . . Unproven, False Hope, Then she tried to put me on the spot and asked me how ccsvi causes lesions. I have done a fair about of reading and told her from my understanding it cause blood to back up and cross over the blood/brain barrier, causing iron deposits, our body then damages the meylin while trying to take care of the iron deposits. I think I kind of surprised her by knowing the answer. But, she was quick on the response and said that would explain the brain lesions, but that doesn't explain the spine lesions.

I try to educate myself the best I can. Luckily I work a 3rd shift job so I can adjust my sleep schedule so I can attend all of her dr. appts. My fiance getting diagnosed with ms hits home a little harder because my brother in law was diagnosed almost exactally a year before my fiance was diagnosed. I have thought about this since the neuro posed this question to me and I can't remember reading about it. Could someone explain to me a little better how CCSVI causes lesions in the spine?

One a side note, this is just an amazing forum and I am EXTREMELY thankful to have found it. Everyone on here seems extremely open and ready to help one another in any way they can and this is kinda rare these days!!! Hope to hear back soon!!!
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Postby costumenastional » Thu Mar 11, 2010 12:39 am

Just a quick response.
Tell your neuro that while internal jugular veins are the main blood drainage paths from the brain, same goes for the azygos vein and the spinal cord.
She can easily check it out in a basic anatomy atlas.
According to the yet "unproven" ccsvi theory, when azygos blockage is present, blood refluxes may take place inside the spinal cord, leading to not only similar but even worse results. In fact, azygos stenosis is linked with primary progressive disease, always according to Zamboni's theory, and more progressive motors dissability. I heard yesterday that they found 100% stenosis in a poor woman who is sufferinf from PPMS in Canada. Maybe a coinsidense...

Listen, it is well known that blood antibodies and other blood particles cross the blood brain barrier leading to relapses. How and why the cross it is the question. And CCSVI just makes sense to say the least.
Iron is only one of the toxic substances that appear in the brain with the help of advanced imaging techniques. Check out dr Haacke's research. This doesnt mean that immune response takes place due to iron only.
All in all, by fixing any blood reflux - blockage inside the main CNS blood drainage paths only good things can happen. As long as someone can find it that is...

May i suggest to read a bit more? Everything can be found in here down to the smallest detail.

I wish my best for you and your fiance.
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Postby kirch86 » Thu Mar 11, 2010 1:17 am

Costumenastional,

Thanks for your quick response. I know I have a lot more reading ahead of me. I am an engine mechanic that is completely new to this whole MS stuff. There is a ton of info on this site and that is a great thing, however I do get a little overwhelmed trying to sift and search through all of it. I am going to continue trying to educate myself as much as possible. Thanks again for your good explaination!!!
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Postby costumenastional » Thu Mar 11, 2010 1:27 am

Dont mention it.
Just take it slow and with extreme caution.
Soon, your woman will have a serious decision to make, appart from injecting copaxone and she must be well educated in order to avoid mistakes.
CCSVI, as promising as it may sound, may not apply to each and every one of us but there are already doctors and clinics in various countries offering treatment for money. Try to get a firm diagnosis first, before any kind of intervention.
Whatever you do, make sure to take this to a very credible doctor, leaving no room for errors.

Hope i helped somewhat.

I forgot! Check out the sticky posts first. There are links to the Zamboni's papers. And dont be anxious to convince your neuro if she doesnt want to listen. It's a vascular issue after all ;)
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Postby Donnchadh » Thu Mar 11, 2010 2:47 am

costumenastional wrote:Just a quick response.
Tell your neuro that while internal jugular veins are the main blood drainage paths from the brain, same goes for the azygos vein and the spinal cord.
She can easily check it out in a basic anatomy atlas.
According to the yet "unproven" ccsvi theory, when azygos blockage is present, blood refluxes may take place inside the spinal cord, leading to not only similar but even worse results. In fact, azygos stenosis is linked with primary progressive disease, always according to Zamboni's theory, and more progressive motors disability. I heard yesterday that they found 100% stenosis in a poor woman who is suffering from PPMS in Canada. Maybe a coinsidense...

snip


Do you have a link to the story about this woman?

When I had the color Doppler CCSVI ultrasound, the radiologist cautioned me that the ultrasound can not penetrate through the beast bone to examine the condition of the azygos vein beneath it. I have PPMS, so am planning on urging the IR to examine the azygos vein while I undergo the venogram.

Donnchadh
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Postby costumenastional » Thu Mar 11, 2010 3:15 am

Donnchadh, i am sorry.
This is just what a Canadian friend told me. No reason not to believe her as she had an indicative for ccsvi doppler herself just yesterday. She told me about that other woman who is her friend's wife that had a jug 80% blocked and her azygos 100%.
Anyhow, she also told me that she will post about her test as soon as she gets some rest from the long trip. She is a TIMS member and you ll get the chance to ask her about that woman herself.
If you happen to miss it i ll let you know. I just dont know if she wants me to speak on her behalf.
My guess is that they found the azygos blockage via MRV. 100% stenosis should be kind of hard to miss.
Doppler cannot directly see the azygos but MAY suggest reflux below the IJVs through a trained specialists eye. In any case it will take MRV and even better a venogram to make sure.
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Postby magoo » Thu Mar 11, 2010 5:55 am

Kirch86,
I wanted to mention that soon the CCSVI Alliance website will be up and it will be a direct resource to everything CCSVI.
Also, you are wonderful for taking such good care of your fiance and for being well informed.
I took Copaxone for a few years. It was the best for me at the time since it didn't have such bad side effects. I stopped once my CCSVI was treated.
Best of luck to you, your fiance and your brother-in-law.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby sbr487 » Thu Mar 11, 2010 6:46 am

Just 6 months back I was hoping that we see cure for MS within next decade. Six months later, we are here staring at a treatment as real as CCSVI.
Hooray Zamboni! who looked at things as they are and did not try to overcompliate things ...

Reminds me of my college days when you have to submit a topic for seminar. The Prof. thought he has very hitech and did not accept anything simple. So most of us first came up with do-able topics and went on to add fancy suffixes like "heuristics algo", "look ahead", "non deterministic" before approaching ... its a different issue that the content and topic had no co-relation whatsoever LOL ...
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Postby tzootsi » Thu Mar 11, 2010 7:40 am

Kirsch86, since your friend has celiac, this may indicate there are other food issues that are tied to her MS. It may be worthwhile to explore the connection between foods and ms. Look at the direct-ms site, and the MS Recovery Diet site for some good info.
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Postby Cece » Thu Mar 11, 2010 2:14 pm

Welcome to the forum; it is a good place here! One thing I might add is that, if she hasn't looked at Zamboni's research papers that show what a lesion from chronic venous insufficiency (elsewhere in the body) looks like side-by-side with an m.s. lesion, that was rather convincing for me.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby fogdweller » Thu Mar 11, 2010 3:41 pm

sbr487 wrote:Just 6 months back I was hoping that we see cure for MS within next decade. Six months later, we are here staring at a treatment as real as CCSVI.
Hooray Zamboni! who looked at things as they are and did not try to overcompliate things ....


When I was diagnosed, I put off making some decisions I should have made because I was assuming medical science would find a cure or at least a good treatment within 3-5 years. This looks like it may be much faster than that.

Unfortunately I was diagnosed in 1977 two years of noticing disease symptoms. 35 years ago. Funny how science goes in fits and starts. We seem to be at a good start place, bout 30 years late. LOL
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Postby 3girls » Thu Mar 11, 2010 4:18 pm

After she was diagnosed with celiac, did she start eating a lot more legumes? This could have been a major aggravater. I would also refer you to DIRECT-MS.org for nutritional strategies and supplements.
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Postby bluesky63 » Fri Mar 12, 2010 8:36 am

Hi there, and welcome. :-) I have been dealing with celiac issues for about fifteen years now, since my daughter was diagnosed. Let me tell you it took about two years for her to recover from the years of damage that had taken place to every system of her body before she was properly diagnosed and treated.

You also need to find out if you are actually following a genuinely gluten-free diet -- gluten hides everywhere, in hidden places, listed and not listed. It is extremely frustrating to ferret it out. Forgive me if I am telling you what you already know, but for instance -- you cannot lick an envelope or a stamp because there is gluten in the paste; wheat is dusted on many brands of candy and not listed on the label; wheat is used to cut spices and not listed, even the generic term "natural flavor" can mean a product is not gluten free. A simple piece of deli meat usually has gluten in it. Etc.

The only way we are sure we have gluten-free food is to get fresh, organic, unprocessed food. Fresh fruits, vegetables, and gluten-free flour directly from trusted vendors. Even fruit in the grocery store can have a glaze on it that's not safe. A salad bar can have a spray on it with gluten. And so on. Maddening.

Beyond that . . . celiac disease itself causes malabsorption and nutritional deficiencies. It also causes brain lesions that mimic MS. It is a differential disgnosis for MS. If you went to a neuro who diagnosed MS, it may be an incorrect diagnosis.

I would look for the best celiac doctor you can find and work with them to find answers. I would also approach diagnostic testing and therapy for CCSVI. I think they go together. :-)

Let me know if you need help finding a celiac center. The bad news is that it sounds overwhelming. The good news is that after the first learning curve, it gets much better, and my daughter is now incredibly healthy. :-)
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Postby Merlyn » Fri Mar 12, 2010 12:33 pm

Tell her to get her iron tested, a full iron panel... celiac disease causes anemia, my friend almost died because of this:

get a full iron panel including ferritin, TIBC, total iron, transferrin...

http://celiacdisease.about.com/od/sympt ... Anemia.htm
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Re: neuro comments

Postby Nick » Fri Mar 12, 2010 1:24 pm

Hi kirch

You've posted an interesting account. Because of your gal's gluten intolerance, I'm with the others who recommend you visit Direct-MS. I must confess I'm one of the founders of Direct-MS so I'm wickedly biased.

We also have a section at our site dedicated to CCSVI. I often see extreme ends of the spectrum in the debate about CCSVI, these being entirely autoimmune versus entirely CCSVI. I don't think most cases of MS result entirely from one or the other but rather a combination of both.

I am disappointed with the general MS neurology community who diss CCSVI, probably because they feel it denigrates their long held belief that autoimmunity is the key element of the MS disease process. Instead of feeling threatened I had hoped they would embrace CCSVI as a plausible means of compromising the blood brain barrier that facilitates autoimmunity. After all, a conduit/pathway for the immune system to access neurological tissue is a critical necessity for autoimmunity.

Our guy Ashton has written an excellent position paper which discusses these aspects.

Good luck with your fiance's pursuit of well being. If there ever was a "good" time to be diagnosed with MS, now is that time. There are plenty of excellent strategies afoot to be employed in addressing the disease.


Cheers
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