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BUMP...please read- all folks wanting information regarding iron and Zamboni's research.

As I've said before in various forums, I was dx'd with ironoverload (Hemochromotosis) a few months after being dx'd with MS after my first and only exacerbation. I was found to have lesions both brain and spine, typical of MS. I suffer MS symptoms contantly. Mainly a lot of fatigue, depression, fog brain and tingling. Anyway, I mention this all again in this context because I absolutely believe the iron is a causative factor and not an effect.
Perhaps, I've always had ccsvi and that fact was not significant until my iron levels started rising with age.

Also, I was thinking about the rr part of RRMS. Stress is a vasodilater right? Perhaps that is one trigger among others that could cause stenosis to reach the tipping point that would start a reflux. Then perhaps over time the stenosis retriets enough for recovery.

Just a thought.

Just to keep things interesting: I have been borderline anemic my whole life. I was diagnosed with ms at age 20.

No exacerbations for the first 10 years of my disease. Then 2 pregnancies with terrible anemia. Chomped on ice for nine months straight each time.

After #2 was born I started on Avonex for 4 years, Rebif for 2, Tysabri for 3. I was constantly anemic, and having exacerbations and slow progression during all of those years. I fought it with Procrit, but it was only a band-aid.

I have been off of all DMDs awaiting further testing for CCSVI (ultrasound was positive for reflux in both IJVs). I'm back to being borderline anemic since I stopped these drugs a year ago. I am still progressing.

How does someone like me fit into this equation?

You still have iron in your blood lucky. Whether it's a lot or a little it's there ...

The problem with associating iron deposition with CCSVI and MS is that iron deposition is seen in many other neurologic conditions, none of which are associated with CCSVI. Here are some links to pertinent studies:

http://www.ncbi.nlm.nih.gov/pubmed/17179895

http://www.sciencedirect.com/science?_o ... c034810007

http://www.ajnr.org/cgi/content/abstract/27/6/1230

http://emedicine.medscape.com/article/1150519-overview

Also, nerve cells release iron when they are damaged or die, so iron deposition in MS may be an effect, rather than a cause...

marcstck wrote:Also, nerve cells release iron when they are damaged or die, so iron deposition in MS may be an effect, rather than a cause...

It seems to me like it could be a cascade, where the iron released when nerve cells die causes further damage in the area.

marc, what I know is that my iron went haywire due to a genetic propensity for it to happen.I don't believe that aspect of my health was related to ccsvi or ms. But perhaps the HH appearing with the ccsvi condition may have caused the lesions I have.

I think the fact that iron deposits appear with other diseases may just mean there are other sets of factors that could add up to the same result.
I haven't had any ccsvi imaging. For all I know, my lesions were caused by my HH alone.

paulmur wrote:marc, what I know is that my iron went haywire due to a genetic propensity for it to happen.I don't believe that aspect of my health was related to ccsvi or ms. But perhaps the HH appearing with the ccsvi condition may have caused the lesions I have.

I think the fact that iron deposits appear with other diseases may just mean there are other sets of factors that could add up to the same result.
I haven't had any ccsvi imaging. For all I know, my lesions were caused by my HH alone.

My lesion formed just as my iron levels peaked. Like i mentioned elsewhere, I only have one gene for hemochromatosis, but that is enough to raise iron levels. When I dropped my levels of iron by phlebotomy to more normal levels (easy for me as I wasn't particularly overloaded by doctors standards), my tiredness and fatigue disappeared instantly, in 24 hours. I didn't know whether to laugh or cry! I could have been free of it all two years ago, if my doctor had taken any notice of my "high iron levels" and got them down. They were only slightly above normal in ferritin measurements.

Now I find I have porphyria. A very very rare genetic disease. Yeah right! Doctors don't test for it because it is very very rare. My point is, it's not rare at all. It's prevalent in Scottish (me), Irish, and northern European bloodlines. Porphyria carriers react to iron, drugs (they love giving you those) contraceptives, and alcohol and makes your brain do strange things, just like MS. There must be heaps of genetic interactions going on. 90% of porphyria carriers never show a sign of it, but it will mix with iron or being on the pill or too much dairy produce or beef and whamo......You have MS, here take some more drugs.

Big pharma would crumble if this was all sorted out.

My son has it too, his diagnosis was autism/ADHD. My niece has it, her diagnosis depression, my brother has it, his diagnosis stuffed liver. My sister and I diagnosed with MS. It can all be fixed with phlebotomy, cessation of drugs/contraceptives and careful diet. No money in it for Big Pharma there. Hmmmmm......... Bad for the packaged food industry too, they put so many additives in, most food is a chemical cocktail these days. Every breakfast food is packed with extra iron, everything is highly preserved with nitrates and sulphites.

I was pretty healthy until I hit 45 and the iron had built up over the decades, then whammy.... My sister was injected with iron as a teenager, she got MS much earlier than I did, at 30 years.

Marc and all-
Yes, iron is implicated in many brain diseases, and how it gets there can vary. It can be deposited when oligodendrocytes die, or when there is a break in the blood brain barrier and heme is deposited in brain tissue.

BUT what Drs Zamboni and Singh found in this paper was a situation unique to MS:

This review focuses iron overload and oxidative stress as surrounding cause that leads to immunomodulation in chronic MS. Iron overload has been demonstrated in MS lesions, as a feature common with other neurodegenerative disorders. However, the recent description of chronic cerebrospinal venous insufficiency (CCSVI) associated to MS, with significant anomalies in cerebral venous outflow hemodynamics, permit to propose a parallel with chronic venous disorders (CVDs) in the mechanism of iron deposition. Abnormal cerebral venous reflux is peculiar to MS, and was not found in a miscellaneous of patients affected by other neurodegenerative disorders characterized by iron stores, such as Parkinson's, Alzheimer's, amyotrophic lateral sclerosis. Several recently published studies support the hypothesis that MS progresses along the venous vasculature. The peculiarity of CCSVI-related cerebral venous blood flow disturbances, together with the histology of the perivenous spaces and recent findings from advanced magnetic resonance imaging techniques, support the hypothesis that iron deposits in MS are a consequence of altered cerebral venous return and chronic insufficient venous drainage.

It may be that iron deposition is the connective tissue in all neurovascular disorders, but the unique presentation of MS demylinating lesion may be due to the venous nature of deposition. Dr. Eliot Frohman spoke about this in Bologna, where he posited that all "autoimmune" diseases may very well be connected by venous congestion, and that the immune system might be following the escape of the blood into tissue. Obviously, more research to be done, but Zamboni's discovery of these extracranial venous malformations points to a very specific aetiology for MS.
cheer
PS Marc, can you shorten your links so the page works better? thx

After all I read there is so much involvement within the iron metabolism that it is not so easy to detect the origin of the phatologic process in. Right now there are some theoretic hypothesis which have to be proved. Nevertheless the study made in Buffalo will bring us some answers. It´s just some more days and we will know.
Some question remain for example the epidemiologic question?

http://www3.imperial.ac.uk/newsandevent ... 16-15-2-44 This is so interesting, and it relates to my family in a big way.