Friday, 5 November 2010

Odds and ends

A few things have been crossing my mind lately, that I thought I would like to share. Firstly, my older MS symptoms (intention tremor in my left hand, MS hug, weird optical effects when tired being the main ones) are still hanging around, although much less severe than before my procedure. Later ones have almost gone, noticeable only to those who know me well. This would sit well with the theory that the damage in my CNS is related to the venous circulation, as older damage is likely to be more profound and more difficult to recover from, but more recently affected areas would recover more quickly, following an improvement in that circulation.

The main symptom I have left is trigeminal and/or occipital neuralgia, for which I take carbamazepine. Compared to the cut my head off please severity of the pain I had even a few months ago, the pain is relatively mild and of short duration. Little is known about the causes of this horrendous condition, but interestingly many cases are related to an abnormality where the nerve comes out of the skull from the brain, or where a blood vessel presses on the nerve.  I wonder if there is a structural relationship with CCSVI?

I am not, nor have I been, taking any of the disease modifying drugs. The nearest I have taken to an immune modulator is Cordyceps sinensis capsules. I took them primarily because they reduced my fatigue levels. For those familiar with the spoon theory of chronic disease, they gave me an extra spoon. Along with vitamins D and B12, that is my main supplement, although I'm finding it hard to maintain any motivation for taking supplements at the moment.

As I said in a previous post, I have two friends undergoing the procedure at the moment. Both were found to have significant (greater than 70%)  blockage of the jugular and azygous veins. Regardless of any direct causal link with MS, this must reduce function in the brain and spinal chord. I am waiting to hear their results.

Finally, many people have remarked on the restoration of my personality since the operation. I had not been aware of it myself, but I suppose chronic pain and reduction in quality of life could have been responsible , but I am amazed how many say that I have my old self back. The scientific arguments continue, but we who have undergone this life-changing operation are its greatest argument for making it widely available.

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