This Is MS Multiple Sclerosis Knowledge & Support Community

Hi,

I'm a new PPMS UK member brought by researching CCSVI. I'm a 68 y/o male, dx late 1980's, but early symptoms since '70's. Have now been wheelchair bound for about five years, but am not on any medication.

I recently discovered/realised that my deceased mother had suffered from haemochromatosis - iron overload. I had a blood test and it was found I am a carrier of one of the two copies of the gene which transmits this hereditary condition.

Are high iron levels a common MS symptom? I have recently read that iron is often found deposited in the brains of MSers, and wonder if this is usually so, and if the iron levels can be reduced to any advantage, and if so how?

I have not located much on this site - probably looking in the wrong place - of PPMS folk having benefitted from CCSVI interventions.

Chris

Hi Trent and welcome to the forum. There may be some MSers with high serum iron levels, but it's not a particular MS symptom. There are MSers with iron-poor blood too. Iron in MS is a problem, though, but it's iron deposition in the brain. That iron deposition in the brain appears to be a phenomenon associated with or possibly caused by CCSVI, the focus of this forum.

Hi CHris there is not a lot of data yet and what they have released so far focuses on RRMS--I believe because it takes so long to say with any certainty that a progressive person has stopped progressing and improvements can't be necessarily expected in progressives, you do not know ahead of time which nerves are totally destroyed and can't come back.

Dr Silvi did say in the bologna notes that "no one is lost." but that is his opinion and not documented, and I would not assume this means return to normal but more likely a ceasing of progression.

I am SPMS and have benefited some from my procedure. Click the regimen thread word below my post here and you can read what happened to me so far. MY biggest hope is for no more progression, but in my case I have had a dramatic reduction in spasticity that has improved my life quite a bit.

You can click the research sticky and read the FIRST page second post, the Bologna notes are in there and the Liberation report from the CX symposium is in there too.

I have HH (diagnosed 11 years ago) and MS (diagnosed earlier this year) and came across CCSVI following research threads on iron and MS. There are some interesting similarities in populations and occurence and elevated ferritin may be a marker of MS activity as it is for HH. I think that there may be a connection between HH and MS as HH may aggrevate the situation of iron overload in the brain which plays well into the CCSVI theory. As HH causes increased iron deposition in every other organ, why not the brain as well if there is an entry mechanism.

Hi,
Thank you for your helpful replies. They give me much food for thought.
Chris

http://www.ncbi.nlm.nih.gov/pubmed/568576
Hypovitaminemia A in idiopathic hemochromatosis and hepatic cirrhosis. Role of retinol-binding protein and zinc.
Brissot P, Le Treut A, Dien G, Cottencin M, Simon M, Bourel M.

Serum levels of vitamin A, its specific carrier protein retinol-binding protein (RBP), and zinc were determined in 34 cases of idiopathic hemochromatosis, 33 cases of alcoholic cirrhosis, 10 cases of non-alcoholic cirrhosis, and in 35 normal controls. In both alcoholic and non-alcoholic cirrhosis, vitamin A and RBP levels were very significantly reduced, whereas a significantly low zinc was observed only in the alcoholic cirrhosis group. In idiopathic hemochromatosis, vitamin A values were significantly lower compared to normals, whereas serum RBP levels were normal and serum zinc was very close to that of the controls. A significant correlation was found between vitamin A and RBP levels in the entire group of 112 patients. These results, (1) in alcoholic and non-alcoholic cirrhosis, confirm a dramatic vitamin A deficiency and the major role played by decreased RBP, but tend to deemphasize the possible role of zinc deficiency; (2) in idiopathic hemochromatosis, affirm a significant serum vitamin A deficiency supposedly by a different mechanism from that of alcoholic cirrhosis since in idiopathic hemochromatosis plasma RBP levels are normal. The role of this vitamin A disorder should be considered in the interpretation of clinical signs of idiopathic hemochromatosis such as ichthyosis and visual disorders.

without seeing the full text i can't see what 'very close' means in terms of zinc levels in patients and controls. however, if i do get a chance to go for the full text i am willing to bet it's not higher than controls, and also that the patient average is not 18.2 umol/L! it is known that the human body needs adequate zinc in order to handle vitamin A properly. AND, zinc repairs cirrhosis, which occurs both in alcoholism and iron overload.