Absolutely right and I can't imagine anyone faulting you for what you're doing.I think participation in trials has to be within a persons comfort zone. This is within mine but not everyone feels that way and those views have to be respected. I have had no second thoughts about my decision.
MS Frontiers 2005 - Trials of neuroprotection in MS: present and future
Dr Raj Kapoor from The National Hospital for Neurology and Neurosurgery, London, focused on clinical trials of neuroprotection in MS.
Until recently, it was thought that disability in MS was caused mainly by the gradual loss of the fatty insulating layer of myelin which surrounds nerve fibres (axons), and which allows them to conduct electrical signals. However, we now know that most of the permanent disability in MS occurs because the axons themselves degenerate.
Experience suggests that the current strategy of modifying the immune system may not be able by itself to prevent this axonal degeneration and consequent disability, and that we will need to develop a second strategy, called neuroprotection, to achieve this goal. In order to do so, we will need to identify and to inhibit the mechanisms by which axons are damaged.
Research work has already identified several such mechanisms. For example, our group has shown that axons may be flooded with toxic levels of sodium from the surrounding tissue fluid as a result of inflammation in MS, and that the resulting damage can be prevented by drugs which reduce the entry of sodium. As a result, we have been awarded a grant by the Multiple Sclerosis Society to carry out a clinical trial to test the neuroprotective effects of one of these sodium channel blocking drug, lamotrigine, in people with the secondary progressive form of MS. We will randomize people in the trial to receive treatment either with lamotrigine or with an identical placebo (i.e. dummy) tablet for two years.
We will be able to compare the effect, of lamotrigine with the placebo, on the gradual shrinkage of the brain caused by axonal degeneration. This will be done by carrying out MRI scans at regular intervals. We will also measure the actual levels of disability in the two groups to assess the extent to which the treatment slows down its progression. This is likely to be the first of a number of trials which seek to block axonal degeneration by inhibiting the mechanisms by which the axons are damaged, and which offer new hope of treatments which can prevent people with MS from becoming disabled.
What I do know is MS is a complex disease and that if it was simply an autoimmune disease it would be much easier to treat than it currently is. I am sure the inflammation is modifying the disease course, but it may prove to be secondary to what is causing the disease.
RESEARCH IS A BIT LIKE A LOTTERY – YOU HAVE TO PLAY AND THEN SPREAD YOUR BETS IN THE HOPE OF HITTING THE JACKPOT. I THINK THE ODDS ARE GETTING BETTER.
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