Is there a connection?

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Is there a connection?

Postby Maryzen » Thu Feb 04, 2010 10:01 am

I have Hereditary Spherocytosis, a lack in the protein ankyrin ANK-1 which acts as a structuring glue for so many things. My red blood cells do not hold the normal structure and are instead round or spherical. I wonder if the lack of the important protein ANK-1 has anything to do with my MS symptoms. The unraveling of myelin, the glue like substance that insulates the neuron, seems connected in some way to me. Am I far off or should I push my Dr to further investigate?
hmmm wonder
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Postby shye » Thu Feb 04, 2010 5:15 pm

knowing almost nothing about this genetic conditon, I think it just affects red blood cells, damaging their structure, they break open easily, so get anemia.
If this is correct, the myelin is a different type of cell, so would not be affected.

BUT if you have MS, and also have Hereditary Spherocytosis, then I would think that--as part of the CCSVI theory--that when the blood is in near stasis in the brain because of the defective veinous outlet, that it might break or leak its iron more easily into the brain than if you did not have the RBC defect.
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Postby Bethr » Thu Feb 04, 2010 7:22 pm

Hi Maryzen,
Hereditary Sperocytosis is one of the genes that can make you have high serum ferritin, (overload iron), if you have one or two hemochromatosis genes, this could be a cocktail for MS symptoms.

I've read quite a bit about it whilst researching my own cocktail of hereditary genes, that caused my sister and myself to be diagnosed with MS, when actually we were iron overloaded due to a hemochromatosis gene(causing serious fatigue and sleeping), the other hereditary problem we have is Porphyria (causing neurological problems). The two together are bad news and mimick MS. Doctors never picked it up, sister DX'd for MS for over 20 years, me for 2 years.

You might be interested in the "phlebotomy anyone" thread. Although phlebotomy is probably out if you are anemic. There are other methods to chelate iron. There are a number of us trying out phlebotomy, with some amazing results (well for me anyway).

Anyway, best to do you own research, but thought I'd mention it.
Hope that helps.

Last edited by Bethr on Thu Feb 04, 2010 7:52 pm, edited 1 time in total.
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Postby Bethr » Thu Feb 04, 2010 7:49 pm

I've just found a link for you to read re HS and Hemochromatosis genes.
A lot of people in here with MS seem to be overloading iron and iron is implicated in CCSVI.
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