drsclafani wrote:I am far from convinced that these lesions are infectious. I think they are congenital. I think that most of what is called restenosis is probably inadequate dilatation.
Hello Prof S,
I agree with you that lesions are not caused by infections but disagree that they are congenital. I recently wrote to Prof Simka, following his recent paper, questioning the nature of venous malformations. In summary I think:I do not see sufficient evidence of venous malformations in children with MS to say that they are congenital.
Text of e-mail:
"Useful research from the Simka team but their results do not justify the conclusion 'The results of our survey indicated that venous malformations are most likely congenital, and multiple sclerosis had no significant impact on the development of venous pathology.'
The results may indicate that venous malformations are congenital. However, venous malformations may be the result of the interaction between genetics and environmental factors during the life of the person who develops CCSVI syndrome. Unknown factors may also be involved in the formation of venous malformations.
I wish Prof Simka and other CCSVI researchers would keep open minds on venous malformations and just treat what they find using the most effective diagnostic tools and treatment methods. Otherwise, they risk falling into a black hole, just like the one that Neuros fell into called autoimmunity."
My personal view (after 10 years of studying MS) is that it is a multifactorial disease with CCSVI syndrome being a treatable symptom. 146 years after Charcot's post mortems the etiology of MS is still a mystery. I suggest that CCSVI researchers keep away from drawing conclusions on the etiology of MS. It is a black hole, best avoided, which leaves you open to attack by Neuros.
It is a year since you de-stenosed some of my veins for which I am very grateful. However I still think that helping pwMS is a matter of treating symptoms, not altering the etiology of MS. For me, this includes treating CCSVI syndrome, altering the immune system, increasing vit D3 levels, treating CPn and Lyme infections, improving Omega balance, improving diet, changing gut fauna and flora, etc. From a treatment viewpoint different therapies help different pwMS. I do not understand why this is true, but stick with my pharmaceutical approach "if the medicine works use it". Far more learned people that me will determine the etiology of MS in the coming decades (maybe) but 146 years after Charcot I do not suggest any pwMS waits for the whole answer on MS before treating symptoms.
So my question - are venous malformations:
a - congenital.
b - interaction between genetics and environmental factors during the life of pwMS.
c - caused by unknown factors.
It is not a trick question as my answer is "I don't know but tend towards 'b' as MS develops later in life than in our early years".
My MS mental fog remains much improved.................
Mark Walker - Oxfordshire, England. Retired Pharmacist. 12 years of study around MS.
Mark's CCSVI Comment: