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Posted: Sun Dec 14, 2008 2:03 pm
by Terry
Cheer,
I won't say "step away". I'll say, "Can I join you in finishing off that pecan pie?"
The seroma thing, interesting to me that some of the fluid can come out of the vessel without whole blood coming out.
My daughter-in-law is sleeping on my couch right now. Her one month old son is sleeping in his seat near her. Cute. We had three new babies this year. All of my sons had new babies.
Pretty used to the migraines. No real pain with them. Just feel them coming on then cannot see well, then a little pressure around my teeth. Sometimes when I sneeze or bend over afterward, my head is sore.
Imagine all the little things the MSers here deal with that don't get posted b/c it seems normal.
I started having migraines in the 80's. I was not a smoker at that time. I don't know how long the effects last, but most of my trouble has come when I was not smoking.
Soooooooooo, back to iron and Zamboni??????

Posted: Sun Dec 14, 2008 3:45 pm
by CureOrBust
Terry wrote:Zamoboni didn't actually say that there was leakage of the blood into the brain, did he? Would he have been able to see that?
I am guessing that any leakage would be high in water content, and would then show up on an MRI.

Posted: Sun Dec 14, 2008 5:58 pm
by Terry
Has anyone here ever had that show up in an MRI?

MS & Iron

Posted: Tue Dec 16, 2008 9:25 am
by kimrene
What another great thread! Learning so much, yet getting so confused! :?
As a "newbie", I am looking for answers everywhere and looking back at my history clear back into my teens.

In looking back, I honestly believe that my first "symptoms" began when i was about 16. I am 42 now. When I was 16, I went to get out of bed in the morning to get ready for school, when my feet hit the ground, my entire body fell to the floor. My legs had NO strength, I couldn't even stand back up. I became a bit hysterical so my mother, ( a slapper), slapped me out of it over her own frustration I guess. It has been one of those memories that have always stayed vivid.
My mother did take me to the Dr. and he determined I was anemic.
I started on some Iron supplementation and improved but the constipation the Iron caused was unbearable so I gave it up.
The problem seemed to resolve itself except for occasionally my left leg would buckle on me out of nowhere and I'd nearly fall, but no pain in my leg.

I went years without any significant issues although I did remain sporadically anemic throughout my 20's and was usually turned away from giving blood or given a snack before I could give blood.

I've had my Iron tested several times these last several years as I've had great fatigue at times etc...I suspect the M.S. really took hold about 10 years ago which is when things really began changing with my body issues.

As I mentioned in an earlier post today in another thread, my MRI report shows excessive Iron deposition in my Basal Ganglia. Just last night I was racking my brain on this one.
I think I may have discovered a few potential answers thanks to ALL of you! I can't believe how many intelligent, diligent, educated folks are on this list. I'd swear some of you have medical degrees.
As a former nurse, I only thought I knew stuff. I am having to look up words I've never heard of and try to wrap my head around concepts that are complicated. Thanks for making it a little bit easier!
Kimrene

P.S.

Posted: Tue Dec 16, 2008 9:51 am
by kimrene
One thing I wanted to add to the previous post is that it is my Left side NOW that gives me the most trouble. This is why I think the teen episodes are connected to my diagnosis today.
Kimrenee again

Posted: Tue Dec 16, 2008 3:43 pm
by gainsbourg
kimrene said
When I was 16, I went to get out of bed in the morning to get ready for school, when my feet hit the ground, my entire body fell to the floor. My legs had NO strength, I couldn't even stand back up. I became a bit hysterical
Do your muscles still give way like that? It sounds a lot like cataplexy, a rare condition that often goes undiagnosed (or confused with MS) where use of any muscle can suddenly be lost due to an emotion like fear or self consciousness. Those who get it often also suffer from narcolepsy, a condition where REM sleep is experienced at unusual times during the sleep pattern, eg when falling asleep, or even in the middle of the day.

During REM sleep our legs are normally paralysed to stop us acting out our dreams, but the brain can get confused and do this during waking hours eg when getting out of bed. Mild cases of narcolepsy also get overlooked by the medical profession. Narcoleptics often get a full nights sleep yet are usually tired as they don't go into deep sleep for long enough

the fact that the brain can paralyse us during REM sleep has often made me wonder...could this remarkable mechanism go wrong on a chronic basis and explain certain MS symptoms?

gainsbourg

Posted: Tue Dec 16, 2008 5:34 pm
by Terry
Gainsbourg,
There was a link here a while ago that compared MS to hibernation. I looked for it once since then but I think the link is gone- or it doesn't work anymore.
Terry

Posted: Tue Dec 16, 2008 7:15 pm
by kimrene
Gainesbourg,
Thanks for the reply. My leg rarely does that anymore but I do find it interesting that it's my left side, lower body that is most affected by the M.S. Also interesting about the sleep info. Until I started Trazadone and Zanaflex at bedtime, I rarely got more than a few hours sleep at night . What a blessing it was to finally start sleeping. My sleep study said I kept going very deep but because of my "nocturia" issues, I still get up often at times. He thought it was wierd that I'd wake up and need to use the bathroom but then get into bed and fall right back into deep REM. Maybe I stayed in somewhat of a state sleep while getting up.
Kimrene






gainsbourg wrote:kimrene said
When I was 16, I went to get out of bed in the morning to get ready for school, when my feet hit the ground, my entire body fell to the floor. My legs had NO strength, I couldn't even stand back up. I became a bit hysterical
Do your muscles still give way like that? It sounds a lot like cataplexy, a rare condition that often goes undiagnosed (or confused with MS) where use of any muscle can suddenly be lost due to an emotion like fear or self consciousness. Those who get it often also suffer from narcolepsy, a condition where REM sleep is experienced at unusual times during the sleep pattern, eg when falling asleep, or even in the middle of the day.

During REM sleep our legs are normally paralysed to stop us acting out our dreams, but the brain can get confused and do this during waking hours eg when getting out of bed. Mild cases of narcolepsy also get overlooked by the medical profession. Narcoleptics often get a full nights sleep yet are usually tired as they don't go into deep sleep for long enough

the fact that the brain can paralyse us during REM sleep has often made me wonder...could this remarkable mechanism go wrong on a chronic basis and explain certain MS symptoms?

gainsbourg

Posted: Wed Dec 17, 2008 2:12 am
by gainsbourg
On Google I found a study implicating iron in yet another neurological illnes - Restless Legs Syndrome (RLS) which is quite common in those with MS
Results of the first-ever autopsy study of brains from people with restless legs syndrome (RLS) suggest that the disorder may result from inefficient processing of iron in certain brain cells
http://www.ninds.nih.gov/news_and_event ... s_iron.htm
A recently-released Canadian study showed that people with multiple sclerosis are approximately 2.4 times more likely to have the condition Restless Leg Syndrome versus the general population
http://www.thisisms.com/article229.html

Apparently RLS is due to poor iron uptake in the brain - the transferrin receptors are decreased - just as the Egyptian study found is happening in MS

gainsbourg

Posted: Tue Dec 23, 2008 1:59 pm
by DIM
May I ask you how many of you take IP-6 (inositol exaphosphate, widely known as phytic acid) and EGCG for iron overload?
I found that these two are the most potent iron chelators and wonder why no-one uses them in his regimen.

Posted: Tue Dec 23, 2008 2:33 pm
by cheerleader
DIM wrote:May I ask you how many of you take IP-6 (inositol exaphosphate, widely known as phytic acid) and EGCG for iron overload?
I found that these two are the most potent iron chelators and wonder why no-one uses them in his regimen.
Hi Dmitris!
I mentioned those natural chelators on the endothelial health thread, since Jeff takes them. You must have missed it...now it's here on the iron thread as well. Thanks for mentioning them.
We've been discussing iron and its role in endothelial damage in the general thread- and I wanted to list the supplements in this protocol which are known iron chelators, these bind free iron in the blood thru the digestive tract and liver and excrete it:

Bioflavonoids (what gives fruits and leaves their color):
Quercetin (onions and apples), EGCG (green tea) and resveratrol
Phytic acid : found in whole grains, sesame, rice brain, seeds and nuts

Most important, a healthy liver! Milk thistle (silymarin) helps the liver cells handle all of the extra iron and toxins that come thru- outward signs such as petechia, varicose veins, rashes, jaundice and high liver enzymes all speak of an overwhelmed liver.

AC
Merry Christmas and a healthy and happy 2009 for you and your dear wife,
Joan

_

Posted: Tue Dec 23, 2008 5:19 pm
by gainsbourg
DIM,

I think you have brought up an important point here. Chelation is a complex and often misundertood area and the more we know about it the better. It's main purpose is to remove a residual accumulation of a given metal agent, not usually to keep general levels down on an ongoing basis, though it may be used for that too. Mercury chelation, for example, is not normally undertaken to keep down levels of recently ingested mercury on an ongoing basis, but to remove it from the CNS and organs where it may have resided for decades.

In light of recent findings about oxidative stress, I think anyone with a neurodegenerative illness should seriously consider iron, aluminium and mercury chelation to get rid of any possible build up in the brain and spine. Many people on this forum now seem to be in agreement that MS is primarily a neuro degenerative rather than an autoimmune illness. If so, surely there should be a thread on chelation?

If, as recent research seems to suggest, MS may come about as a result of faulty metabolism of iron leading to excess levels in the CNS, then keeping iron levels carefully regulated may help on an ongoing basis. Diet combined with regular chelation may help in this case but it gets complicated.

I have had experience of mercury chelation and often notice that alpha lipoic acid (ALA) is mentioned as a useful MS remedy for various reasons, but if there is any excessive mercury in the body ALA should not be taken except as part of a very careful chelation protocol, because it liberates big stores of mercury from fat all over the body. Once liberated it can easily be redeposited in the CNS.

Also, anyone contemplating an iron chelation regime (as I am) should take care if using IP6, deferiprone or any other iron chelator as they also chelate other vital substances.

gainsbourg

Iron

Posted: Tue Dec 23, 2008 6:00 pm
by Shayk
Hi all

I've been intermittently following your discussions and this may have already been posted. If so, my apologies. If not, here's an interesting manuscript by Douglas Kell at www.arxiv.org entitled:

Iron Behaving Badly: Inappropriate Iron Chelation as a Major Contributor to the Aetiology of Vascular and Other Progessive Inflammatory and Degenerative Diseases

In a cursory glance I didn't see MS mentioned, but Lynda Carol, reference is made to diabetes on p. 11. :)

Take care all

Sharon

Posted: Wed Dec 24, 2008 1:39 pm
by DIM
Also, anyone contemplating an iron chelation regime (as I am) should take care if using IP6, deferiprone or any other iron chelator as they also chelate other vital substances.
What other substances you mean Gainsburg, copper, zinc etc?

My wife takes currently 240mg Gingko, 120mg resveratrol, 360mg EGCG, 120mg pycnogenol, 1800mg curcumin and soon 600mg quercetin daily but I am not sure if I should order her IP6, I am afraid the rapid iron excretion through chelation and the problems it may cause her!
On the other hand she has had signs of iron overload, elevated liver enzymes (fully restored with milk thistle), some varicose veins and many brown spots in her face that are there one or two years before her diagnosis (the spots).
All of them lead me to search natural methods for iron chelation, as Cheer mentioned IP6, quercetin and EGCG are probably the most potent of them, bear also in mind all iron chelators should not be taken with foods as they directly bind with the iron contained in the food and can't do their job, same reason why IP6 is a powerfull chelator when taken alone and does nothing when we eat say brown rice that contains it.

Yes Cheer I carefully read all of your posts and believe me although my English don't help me I have read more papers, abstracts, researches etc than a typical doctor!

I have to say a BIG THANK YOU all of you for the published info and your time to search them, this is the power of a community!

Posted: Fri Dec 26, 2008 5:14 am
by CureOrBust
I came across this PDF while looking into the venous insufficiency thread, and it had a reference to Iron.

Doppler Haemodynamics of Cerebral Venous Return
Abstract...In future, the development of this diagnostic technique could be of singular interest in iron-related inflammatory and neurodegenerative disorders like multiple sclerosis.
.....
Finally, in view of the increased iron deposits forming a constant feature of either chronic venous disorders or multiple sclerosis (Zamboni, 2006; Zivadinov and Bakshi, 2004), it should be interesting to measure, by means of MR susceptibility weighted imaging (Haacke et al., 2007), the amount of iron in plaques of multiple sclerosis, evaluating the plaques’ topographic correspondence with the refluxing cerebral veins.
I am guessing more stuff could be found in the references.