A 17 Year Update

(April) it is sixteen years since my first formal diagnosis of ALS/MND, see My Story. Also My Clinical Study commenced on 1st April 1997. Within two years my improvement was significant and my remission remains stable, although pecisely what this signifies remains unclear. My Diagnosis should confirm that I was not misdiagnosed.

Seventeen years post-diagnosis I am wondering if my over-active inflammatory response, although uncomfortable and often very painful, is offering neuroprotection in my case. As mentioned numerous times on this website, I have suffered no discernable neurodegeneration for over a decade but for that entire time I have suffered inflammatory nerve pain and am medicated accordingly.

If ALS/MND is an auto immune illness or has an auto immune component my remission could be partly explained by my body's over-enthusiastic immune system. It responds violently to minor insect bites and stings and I have near constant nerve root Inflammation, more than can be fully explained by my old spinal injuries.

Many researchers are now considering that ALS/MND and many other "untreatable" chronic illnesses are caused by "multiple, combined systemic insults", as I proposed many years ago (see My Theory).

I hope that researchers can get the funding to better understand the human immune system and the concept that a relatively benign organism may act as a catalyst for another organism (systems or organisms) to act uncharacteristically, damaging the central nervous system.

This has been a long time coming. If you agree that ALS/MND may be caused in the way I propose please support researchers working on multi faceted chronic illnesses and research into understanding the Human Immune Response.

Steven Shackel 1st April 2010

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This website is regularly updated throughout. As I have no monthly personal clinical updates to report as I did in the past, this page will be updated sporadically. For ongoing ALS/MND Research updates see the ALS TDI website.

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Dexpramipexole
There are a number of trials being held in many countries to test the efficacy of dexpramipexole in treating ALS/MND. Dexpramipexole has neuroprotective qualities but more data are needed as to why it is neuroprotective and how long its effects may last. There are many links to Dexpramipexole trials and ALS on the internet.the internet.

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Systems Biology
More than a dozen years after publishing "My Theory' of what causes ALS/MND - essentially a domino effect theory - I discovered "Systems Biology".

On the Internet there are many references to scientists (such as Joseph Nadeau) who have discovered that apparently unrelated biological reactions at genetic and molecular levels can cause widely varying outcomes in different people or when combined with different stressors or systemic "insults". This branch of science is continuing to prove what I deduced and theorised many years ago. I therefore believe it could potentially lead to the answers of what causes diseases like ALS/MND.

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Oxidative Stress & Neurotoxicity

The basic premise of my initial research was that excessive oxidation of neurones was a primary process of neurodegeneration observed in ALS/MND. Whether a cause or a symptom, stopping or even slowing oxidation of neurones seemed a sensible thing to do. That was in 1994. Click here for more recent research and opinions.

ALS: A Form Of Sudden, Rapid Aging of The Immune System?

One of the first thing I noted in my own research was that neurones in ALS/MND seemed to be suffering from a rapid form of ageing. This led to me experimenting with antioxidents in an attempt to slow that rapid ageing, which took the form of runaway oxidation. This article discusses that possibility.

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Although Multiple Sclerosis (MS) differs from ALS/MND in many ways it is a form of progressive neurodegeneration and as such we may be able to learn from advances made in MS research. Here is a recent article.

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A Drug to Treat Neurodegeneration?
Since my earliest research I noted the possibility of a recurring link between diabetes and neurodegeneration. There was nothing to indicate that diabetes caused ALS/MND but many lines of enquiry I followed seemed to lead to processes that caused diabetes and processes that caused neurodegeneration being somehow related. I never resolved this connection but this article acknowledges just such a link.