This Is MS Multiple Sclerosis Knowledge & Support Community

Hi there,

All I can get is the Abstract for now:

Eur Neurol. 2010 Jan 30;63(3):136-143. [Epub ahead of print]

Multiple Sclerosis and the Accumulation of Iron in the Basal Ganglia: Quantitative Assessment of Brain Iron Using MRI T(2) Relaxometry.
Burgetova A, Seidl Z, Krasensky J, Horakova D, Vaneckova M.

Department of Radiology, First Faculty of Medicine, General Teaching Hospital, Charles University in Prague, Prague, Czech Republic.

The aim of this work was to quantify the accumulation of iron in the basal ganglia in multiple sclerosis (MS) patients and in a control group, and to investigate the relationship between iron accumulation and other parameters assessed in MS, i.e. lesion load (LL) and brain parenchymal fraction (BPF). Magnetic resonance imaging T(2) relaxometry was used for the measurement. 970 patients with clinically definite MS and 117 controls were examined. Patients were divided into three subgroups according to LL and BPF. This work provides quantitative evidence of increased iron accumulation in the basal ganglia in MS patients in comparison to healthy controls. We also found that in the subgroup with small LL value, iron accumulation is higher than in the subgroup with large LL value. The hypothesis of a neurodegenerative component of MS is supported by the changes in iron content in the brain. Copyright © 2010 S. Karger AG, Basel.

PMID: 20130410 [PubMed - as supplied by publisher]

I got great results from phlebotomy. Got rid of the tiredness and sleeping anyway. Got some iron out, it's toxic, and my iron overload didn't show up very high on blood tests, just raised, so the doctors missed it, and quite a few are not very knowledgeable on iron overload. It's as dangerous as anemia if not more so. Blood letting gets rid of the porphyrins too, which are increased by iron loading, and other triggers.

Prophyria is associated with iron overload and can cause it in susceptable persons. Get hemochromatosis gene checked anytime and also test for porphyria during a bad period when you have symptoms.
I don't think Prophyria is as rare as doctors think it is. Our family have had symptoms for three generations, and no doctor or neurologists, or gastroenterologist or heptologists have picked it up. Average time for diagnosis 33 years.

Another important point is my vein problems I've had forever (not in my neck though) resolved spontaneously straight after the blood letting. I see a link there to to CCSVI. Whether this was due to reduction in porphyins or iron in my blood stream, I'm not totally sure yet, but it must have been one or both of them.

Lets hope Zamboni looks into this further, as it ties in, and Zamboni has studied iron overload and blockages in leg veins in the past. His work is published on the net. He ties leg vein problems in with the hemochromatosis gene C282Y.
Maybe he just hasn't added in the Porphyria gene yet.
Over 90% of people with one of the porphyria genes have no symptoms of it, or may present in different MS like ways. Prevalent in Scottish, Irish, French, English bloodlines.

Hello Happy Cannuck! I am in Sidney BC! I think this is why small amounts of dopamine can help MS symptoms... it is the basal ganglia that gets poisoned with iron in Parkinson's... thereby screwing up dopamine... I was trying to take Zandopa, which is a natural source of dopamine, because the velvet bean has a natural form of l-dopa... people with Parkinson's use it, velvet bean also supposedly chelates iron from the brain, it is what they used in India for Parkinson's and they say that long-term use actually improves Parkinson's... Zandopa unfortunately has a bunch of sugar added, and I don't tolerate sugar, plus I didn't like the taste. I sent away to India for it. Then I found out that there is lots of products, like DopaBean by Solaray, and I am taking two capsules each morning for a total of 100 mg of l-dopa... it seems to help slightly, I probably need twice the amount. I just get tired of swallowing capsules.

Merlyn wrote:Hello Happy Cannuck! I am in Sidney BC!

...

I just get tired of swallowing capsules.

Hi Merlyn,

I am in Victoria. Small world indeed...

I have difficulty swallowing, so I know what you mean about pills. I was severely anemic in October 2009 so I have no choice but to take iron supplements now because I was paralyzed from the combination of MS and anemia. It seems counterintuitive, but maybe not? I have been following your posts and will ask for more iron details on my next blood test.

BTW, I am organizing some get togethers for CCSVI at BC MS clinic followers -- the first will be in Victoria next week. Send me a pm here or check the CCSVI at UBC page in my sig.

Cheers,

Sandra

This work provides quantitative evidence of increased iron accumulation in the basal ganglia in MS patients in comparison to healthy controls. We also found that in the subgroup with small LL value, iron accumulation is higher than in the subgroup with large LL value.

Am I interpreting this correctly--the more brain lesions, the less iron???

i think you are, shye

They have been trying to reduce the lesion load all these years without knowing what exactly they are, whether they are beneficial or not in the long term and without asking the question of what comes first: lesions or relapse?

No scientific answer. Let us be fair and treat the CCSVI equally, from a scientific point of view.

I understand that my example is quite extreme, though I can't stand doctors who treat science in a biased way.

sou

wow, then with all my white matter lesions, i might not have a super amt of iron ...some good news in all this...
the white matter lesions are also a sign of microvascsular problems--which of course goes along to some degree with CCSVI theory--but also goes along with hypertension and arteriosclerosis. I think it would benefit all of us to get blood pressure checked (turns out mine is sporadically very high) and treated, AND follow a diet (and supplements) that deals with arteriosclerosis--low fat, complex carbs, very low sugar, etc etc

I had to get a neck xray a few months ago for chiro--hesitated because I've been absolutely blitzed these past ten years with cat scans, xrays etc, but finally decided my neck needed close attention--and now, super glad did it--it showed calcification in carotid artery --doc listened with stethoscope, luckily no changes yet in arterial flow--so now much more diligent with diet and supplements, AND have started EDTA chelation to help clean out the arteries (...and veins...).
So, my point is, MS is not a one focus disease--many aspects, and ALL need to be addressed.

shye wrote:Am I interpreting this correctly--the more brain lesions, the less iron???

I stumbled over that too. I wonder if it means that, when your immune system cleans up, it's cleaned out the iron (and made a lesion in the process). So, for myself, with 2 lesions, I would be carrying a lot of uncleaned-out iron.

Someone pass the green tea....

happy_canuck wrote:Hi there,

All I can get is the Abstract for now:

Eur Neurol. 2010 Jan 30;63(3):136-143. [Epub ahead of print]

Multiple Sclerosis and the Accumulation of Iron in the Basal Ganglia: Quantitative Assessment of Brain Iron Using MRI T(2) Relaxometry.
Burgetova A, Seidl Z, Krasensky J, Horakova D, Vaneckova M.

Department of Radiology, First Faculty of Medicine, General Teaching Hospital, Charles University in Prague, Prague, Czech Republic.

The aim of this work was to quantify the accumulation of iron in the basal ganglia in multiple sclerosis (MS) patients ...

PMID: 20130410 [PubMed - as supplied by publisher]

I sent an e-mail to Dr. Burgetova 2 days ago. I was asking for Czech full version of her study. It is 20 pages.
I have also asked her if she knows some iron chelators in case I might need them. She says: Deferoxamine and Deferiprone. Dr. Simka told me the same.
Of course, I would prefer "only" phlebotomy but it might be not enough.
I will see...
I go to read
Erika

With CCSVI, some sort of blockage or impediment to flow causes the blood to reflux and deposit iron, which causes damage, which switches on the immune system, which causes the plaques.
PwRRMS have more plaques and respond to immune suppression by developing less plaques, so one could assume that their immune system is fairly active, but they have less iron.
PwPPMS have less plaques anyway and don't respond to immune suppression, so one could logically assume that their immune system is less active, but they have more iron.
I thought iron caused the immune system to switch on.
Maybe pwRRMS have less iron because their immune system is more active, clearing up the damage but causing plaques.
It's intriguing!!

ErikaSlovakia--
but did you ask, or could you ask, Dr Burgetova if the iron removed was from the circulating blood, or does it somehow pull the embedded iron out of the brain and wherever else it accumulates?
I am getting EDTA chelation now, but don't think that chelates iron--is aiming for the cholesterol/calcium plaques--but if i knew for sure the deferoxamine or deferiprone would take the iron from brain, I would have my doctor administer that.
Many thanks for any info.

shye wrote:ErikaSlovakia--
but did you ask, or could you ask, Dr Burgetova if the iron removed was from the circulating blood, or does it somehow pull the embedded iron out of the brain and wherever else it accumulates?
I am getting EDTA chelation now, but don't think that chelates iron--is aiming for the cholesterol/calcium plaques--but if i knew for sure the deferoxamine or deferiprone would take the iron from brain, I would have my doctor administer that.
Many thanks for any info.

They have not removed any iron during or after the study. The do not do it because of MS. These drugs are used especially in case of cardiomyopathy.
As it was diferrent study of iron deposits I have not asked because I do not think she knows correct answer.
I think we must wait for Zamboni group until they tell us clearly what is the correct way of iron chelation for us. Maybe Dr. Zivadinov or another neurologists involved would know.

I would like to know as fast as possible because I still have problems with fatigue. On the other hand I was not doing any exercises before and I am also under a lot of stress. But everybody has some problems so there will be always stress in our lives.
Erika

Thanks Erika