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Re: hemochromatosis

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The subject of iron excess has come up many times in the course of my membership

to this group. It is coming up often now because of the CCSVI discovery. I

research onine a LOT. You may need to find a different kind of doctor because

I'm sure that this subject is not included in allopathic basic training.

I'm sorry that your family has been through so much. Maybe you can find some

information that will help you.

>

> ,

>

> I'm curious where you got the info about MSers being prone to this

> condition.

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My sympathies to you and your family Tina. I also watched my father-in-law

die from hemachromatosis and my ex has it too. Regular plebotomies are the

standard treatment and are successful. HH used to be called bronze diabetes

and still today many doctors are unaware of it. The most common or close to

it hereditary disorder and so easily treatable :(. One daughter is at least

a carrier and donates blood and plasma regularly.

They have found the genetic markers for HH and I was tested a few years

back. I do not have the markers. There's lots of good info out there. I

sure hope your nephew is having regular phlebotomies? And you yourself are

regularly checked? Besides ferritin, you need your transferritin levels

and saturation %. Old misconception that females are fine because they

menstruate is not true.

When I first heard the plaques were iron, I started thinking HH too. But if

15% of people have HH (active and carriers), why aren't there more with MS?

For years dating back to the 80's, I belonged to the Iron Overload

Societies in Canada and the US and I can't recall ever reading of anyone

with MS in their newsletters.

Cait

>

>

> ,

>

> I'm curious where you got the info about MSers being prone to this

> condition. I'm interested because hemo runs in my family. My grandmother

> died from

> it, my father had it, and I have 2 brothers who have it. I now have a

> nephew who is basically dying from all the complications of it and he's

> only 31.

>

> This can cause so many problems and the doctors don't really know how to

> treat it. They only know how to treat the symptoms. My nephew was diagnosed

>

> with diabetes when he was 20. But it was the hemo that caused it. If they

> had realized that it was the hemo back then, he probably wouldn't be going

> through everything that he is right now.

>

> Thanks

> Tina</HTML>

>

>

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I looked through the group archives and found a post about iron deficiency and

night-time muscle spasms. I have those types of spasms occasionally. I looked

it up on the internet and found the same information. I think that an iron panel

would be a good idea to have done so that we know whether to eat foods with

iron, to take a supplement or avoid adding additional iron at all. It's better

to make decisions when you have all of the information.

It could be that the iron that we have isn't going where it needs to go because

it's puddled in the veins just as the CCSVI doc says.

>

> The subject of iron excess has come up many times in the course of my

membership to this group.

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There are several entries re HH and MS when you do a search. Here are 2

mentions I found interesting

This statement on the Iron Overload site surprised me. But I don't see any

documentation where MS is directly tied to HH.

http://www.ironoverload.org/hooks.html

" 14. Excess iron crosses the blood-brain barrier where it may cause or

make worse neurological problems such Alzheimer's, multiple sclerosis, ALS,

Parkinson's, Hallervorden-Spatz Syndrome and even psychological problems.

Iron overload is involved in cerebral malaria and mental problems, and is

associated with HIV infection. There is of course an elemental need for

some iron in the brain. But, when there is iron in an excess of this need

the above problems can occur. "

http://linkinghub.elsevier.com/retrieve/pii/S0165572808002580

Frequency of HFE mutations not different in MSers than general population

The largest groups who carry the HH gene are the ish/Irish ...the

Celtic Curse ... and African Americans. How does that line up with the

incidence of MS?

Cait

>

>

> The subject of iron excess has come up many times in the course of my

> membership to this group. It is coming up often now because of the CCSVI

> discovery. I research onine a LOT. You may need to find a different kind of

> doctor because I'm sure that this subject is not included in allopathic

> basic training.

>

> I'm sorry that your family has been through so much. Maybe you can find

> some information that will help you.

>

>

>

>

>

> >

> > ,

> >

> > I'm curious where you got the info about MSers being prone to this

> > condition.

>

>

>

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