This Is MS Multiple Sclerosis Knowledge & Support Community

Now Iron bothers me, cause one neuro said something like this:
"Biochemicly Zamboni's theory can't be right about iron accumulation, cause iron is in red-cells and redcells has to break to release iron.. and there is no proof of that"
And "Iron should be seen in MRI clearly, but you don't.." etc etc

So what do you think? Im sure Zamboni is right that iron accumulation relates to CCSVI, but precisely how? This iron thing is interesting.

yes iron is in the hemoglobin of RBCs...

from what i understand, RBCs have a life span. at the end of it, they 'break'. specialized macrophages scavenge the iron in the hemoglobin and move it to other cells via transferrin etc.

if you look at haacke's imaging you can see differences btw brain iron in ms and normal subjects - visit www.ms-mri.com

so why the iron accumulation in ms brains... well here is one line of thinking:

-ms patients have lower zinc than normal controls (which in turn can affect vit d3 absorption and uric acid status, also abnormal in ms patients)
-zinc deficiency appears to be able to cause dysregulation and deposition of iron
-low zinc seems to exacerbate low iron levels and vice versa...
-the blood brain barrier has been shown to be weakened in zinc deficiency (although i did find one abstract today suggesting the bbb has some ways to resist the effects of zinc deficiency)

so maybe the various effects of zinc deficiency combine to contribute to iron deposition in ms brain tissue.

my 2c,

JL

Hi.

Ernst wrote: "Biochemicly Zamboni's theory can't be right about iron accumulation, cause iron is in red-cells and redcells has to break to release iron.. and there is no proof of that"

Your proph... eerrrrr..... neurologist forgot the keyword: "YET". If whatever is not proven today means that it is not going to be ever proven, why do we do research anyway? We have such good doctors with so wonderful opinions, based on facts... Not to mention the abilities of predicting the future...

Seriously, there is strong indication that somehow iron is deposited in the brain. According to this doctor, iron shouldn't be there because HE can't think of how it happened. But how can he come to such a conclusion, that there is no iron in MS brain, just because he can't explain it? Here are to possibilities:

1. He is an idiot.
2. He thinks he knows everything.
3. He thinks that patients are too dumb to say something smart.
4. He is ultra conservative and narrow minded.

Personally, I wouldn't let such a doctor to even cut my fingernails.

sou

No proof of red cells breaking? does this mean they are immortal cells? Blood Cells are replaced constantly!

Here's something pretty interesting about a different neurological condition of the brain where iron is involved:

http://en.wikipedia.org/wiki/Pantothena ... generation

Dunno really what to make of this, but maybe one of our brainiacs can see a relation to CCSVI?

Hi Sou:

I like your enumerated list of what could be wrong with that neurologist's line of thinking. It captures my anger at the narrowmindedness of some people who some of the public considers to have the last word on research.

My sister-in-law's dentist told her not to get her hopes up about this new theory and so she's a little less excited about it now. This really gets under my skin. It's her brother, my husband, who was diagnosed with PPMS 12 years ago. I have a PhD in chemistry and worked as a research scientist for 10 years, have read Zamboni's papers (only started since the W5 special however), and have told her that this theory is an incredible change of thinking, looks really promising, and considering the potential benefit/risk, we should (and are) actively pursuing a treatment. My background doesn't give me the backing to say this is bunk - there have been no credible studies brought foreward to disprove it, so I remain hopeful.

People who are getting "advice" from their dentists, pharmacists, and even MDs, along the lines of "this theory will never work" should ask the person if they've actually read the papers. Don't forget that they have undergraduate degrees in which they learned scientific principles in order to carry on their profession. They are not necessarily any more up-to-date in this area than you are.

I do expect more from specialists, such as neurologists, who have a responsibility to be measured and practical in their responses to patients. There is no evidence out there to support the proposition that treating CCSVI will not relieve the symptoms of any MS patient. In fact, the published scientific data and the anecdotal reports from people on this board (which seem very credible and unsensationalized) should give every reason to support aggressive research in this area.

Anyway, that's my rant for the day - if any one reads this, thanks for listening. I feel better now.
Theresa

Next time you go to your neurologist, ask him or her this question:

How exactly does cerebrospinal fluid circulate, we know it's not the heart and that posture and respiration are involved so please explain the driving force behind it.

then wait patiently and when they say it runs from here to there and then to here, say yes but how does it do that? And what exactly is the driving force?

Andrew

jimmylegs wrote:yes iron is in the hemoglobin of RBCs...

from what i understand, RBCs have a life span. at the end of it, they 'break'. specialized macrophages scavenge the iron in the hemoglobin and move it to other cells via transferrin etc.

if you look at haacke's imaging you can see differences btw brain iron in ms and normal subjects - visit http://www.ms-mri.com

so why the iron accumulation in ms brains... well here is one line of thinking:

-ms patients have lower zinc than normal controls (which in turn can affect vit d3 absorption and uric acid status, also abnormal in ms patients)
-zinc deficiency appears to be able to cause dysregulation and deposition of iron
-low zinc seems to exacerbate low iron levels and vice versa...
-the blood brain barrier has been shown to be weakened in zinc deficiency (although i did find one abstract today suggesting the bbb has some ways to resist the effects of zinc deficiency)

so maybe the various effects of zinc deficiency combine to contribute to iron deposition in ms brain tissue.

my 2c,

JL

I'm glad I read this. My neuro said there is a study on zinc levels and ms but she didn't know anything else about it. Your post is very informative. Thanks.

no probs viv elsewhere here at TiMS I've posted links to the various studies that go along with that line of thinking

. He is an idiot.
2. He thinks he knows everything.
3. He thinks that patients are too dumb to say something smart.
4. He is ultra conservative and narrow minded.

BINGO !

Doctor Zamboni's response might be 'extravasation'. which is blood leaking from the veins, because there is a stenosis, causing the blood that is trying to get past it, back to the heart and lungs, to have a higher than usual local venous pressure, causing local red blood cells to leak through. That is probably why lesions form. It may even be related to something called hydrocephalus which is what happens when there is too much cerebro-spinal fluid, or CSF. That comes from the blood vessels around the ventricles of the brain. Is the higher pressure upstream of the stenosis what makes too-high ventricle pressure?

Once out of the bloodstream, the cells probably degrade into their components: thus, iron. Extravasation may also be the reason why the clotting cascade goes on, whose components are definitely associated with 'MS'.

Is iron found at "MS" lesion sites, or are they just scars formed long after the bleeding has stopped? We see these sites on MRIs because blood leaking there has been spiked with gadolinium, very bright on MRIs. If it can get through, maybe red cells too?

The answer I got once, to how CSF moves, was: the sodium pump. Apparently osmosis can move liquids around, without any other impelling force. I am skeptical and remain agnostic on that one.

1eye wrote:Apparently osmosis can move liquids around, without any other impelling force. I am skeptical and remain agnostic on that one.

http://demonstrations.wolfram.com/OsmoticPressure/

I am completely rusty on my zamboni iron theory but have the impression it may have been an oversimplification of iron in the ms brain. I might be completely out of whack here as I've not immersed my brain in ccsvi anything for some time.

Here's a newish paper about iron in the ms brain.
http://onlinelibrary.wiley.com/doi/10.1 ... 23974/full

I like it:

Potential Conflicts of Interest

S.P.: travel expenses, Biogen Idec, Teva. W.B.: board membership, Teva Pharma, Biogen Idec, Genzyme, Novartis; consultancy, Teva Pharma, Biogen Idec, Novartis, Genzyme; grants/grants pending, Teva Pharma, Biogen Idec, Novartis; speaking fees, Teva Pharma, Biogen Idec, Merck Serono, Novartis, Bayer Vital, Sanofi, Genzyme. H.L.: consultancy, Amgen, Biogen, Baxter; speaking fees, Novartis, BiAogen Idec, Serono, Teva.

anybody seen Dallas Buyers club?

Hi 1eye

Maybe you'll like this one better...ms iron conundrum
http://www.ncbi.nlm.nih.gov/pmc/article ... rt=classic

It doesn't have any nasty conflicts of interest, at least not by the author...maybe in source studies. I do have my own conflict of interest though. Since my rituxan ebv/B cell bombing (intravenous and intrathecal...NOT the usual for MS), I've suddenly become iron deficient for the first time that I know of in my life. Didn't even supplement during pregnancy. Wishful thinking leads me to believe all that iron might be going towards repair...which in my simple mind translates to iron not being the big bad guy...maybe just a bit player in a far more sinister plot.

Hope you're doing well.