Hi everyone. + i have done some more research with this disease

General
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hi to all,thanks to all the replies i have had , its been most helpful.

i have now updated a photo of myself.

I have done some more research re ataxia.

I have another disease called heamochromotosis basically iron overload, it is gentic, the gene is named C282Y, this is treatable by means of draining a pint of blood every 3 to 4 weeks to weaken the iron content in my bloodstream.

My personnel belief that there is a correlation between the iron overload and ataxia, in the medical world i think the jury is still out on this idea. Iron as we know is a heavy metal, and in my view this could well damage the brain, in my case the cerebellum.

I have spoken to my heamotologist about this, and he claims that he has not come across this before.

Bare in mind medicine is not an exact science.

At the moment i am using myself as a guinea by delaying the time of going for a blood release.

so far its been 2 months and i will be going to a have a blood release next week.

My gut feel is that i will feel better and may well be a improvement with the ataxia.

i will keep you informed after the blood letting and to see if my theory works.

In the meantime it could be wise to ask your doctors / consultants to take a ferritin test

a healthy reading should be between 50 - 90 . When i was diagnosed i was on a level of 2640!!

about 3 yrs ago, its down to 170.

Also look up heamochromotosis C282Y on google

paul

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Hi Paul, Thank you for pointing us to this article on Hemocromtosis. I agree everyone should be awaire of it. Not may people have heard about it before. Your article jumped out at me because it runs in my family. So I've been tested for this and was told by my blood Dr. that farritin test is not self concussive like the article says too. I copied and pasted some of the articl of the article here after googling *******************************************************************************************************************************************

Blood iron tests

There are several blood tests that reflect the amount of iron in the body; ferritin level, iron level, total iron binding capacity (TIBC), and transferrin saturation.

Ferritin is a blood protein whose levels correlate with the amount of iron stored in the body. Blood ferritin levels usually are low in patients with iron deficiency anemia, and are high in patients with hemochromatosis and other conditions that cause an increase in body iron levels. Since ferritin also can be elevated in certain infections such as viral hepatitis and other inflammatory conditions in the body, an elevated ferritin level alone is not sufficient to accurately diagnose hemochromatosis.

Serum iron, TIBC, and transferrin saturation are often performed together.

Since I went to the site I thought I'd post the link here to make it easier for people to see it. I hope this was the one you were talking about.

http://www.medicinenet.com/iron_overload/page3.htm

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My son was tested also because my Dr said that it can jump a generation or so too! My sister has 1/2 a gene and her son has it full blown. I was told drinking alcohol isn't good because of getting sclerosis of the liver even faster. I have a few Uncles that have it also, they had to stop drinking alcohol all together now too! So I think you are so right, there might be some link. Please keep me posted to what you find out. This is very interesting to me! :0)