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Sunday, July 28, 2013

On Diet and Transverse Myelitis (2)

Within a few hours of my sending my last blog on diet to various TM Facebook Lists, there was a post about Vitamin D, and then a small avalanche of comments. Clearly diet is a hot topic. I guess it reflects the complexity of our lives when we are challenged by a neurological illness for which few physicians can give us clear answers in response to questions:
Why did this happen? (there appear to be many possible causes)
Is there something wrong with me as a person? (probably not)
Am I being punished? (probably not)
How do I manage the symptoms? (come to terms with them, get all the help you can, work hard at physiotherapy)
There must be something you can do to fix this? (Sorry, no magic yet)
There must be something I can do to fix this? (If there is, I am not sure what that may be...)
Is it my diet? (Maybe...)
Transverse Myelitis is 'some sort of damage' (or inflammation, or immune problem) which affects the myelin sheath of nerves at a level in the spinal cord. We all have slightly different levels affected, and different parts of the spine affected (front, side, or back, or a mix) so we all have different patterns of involvement of motor and sensory and pain pathways. But the essence of it is that the myelin sheath of nerves becomes damaged, and even if nerves try to regenerate through the blockage, the sheath may not be good. The sheath allows conduction of signals; poor sheath poor signals.
So is there another similar problem from which we can learn? Of course, there is. Multiple Sclerosis (MS) is a much more common illness with some similar neurological problems. It is much more extensive, often much more damaging to lives, may affect the brain and not just the spinal cord, and can lead to death. A small percentage of people presenting with TM may later develop MS. The research on MS has been extensive over the years, and there are now some 'truths' emerging that may help us, while we are waiting for research to answer our TM questions.
One of the best longterm studies (whatever our modern scientific criticisms) is that by Prof. Roy Swank from Oregon in the US, beginning in 1949. Based on other work showing that MS was geographically distributed, Swank concluded that the distribution matched how much saturated fat we all had in our diet - which had been, and still is, steadily increasing in the Western world. He collected 150 MS patients and started them on a very low fat diet. Some people stuck to it and others did not. When he published in 1990, the results were dramatic. The good dieters, whatever their level of disability, did not deteriorate at anywhere near the rate of those who were unable to keep to the diet. Benefits of the diet were there whatever level of disability people started with. Of course the result 34 years later was best for those who started off with 'mild' MS, but was still obvious in those who began with 'moderate' or 'severe' MS. The death rate in the 'poor' dieters was statistically much higher.
The 'good dieters' were eating about 16gms of saturated fat a day. Even the 'poor dieters' were only eating 38gms a day (compared to the starting point of 125 gms per day. Swank followed his dieters up for 50 years (almost unheard of in medicine). of the 63 survivors, 47 had been 'good dieters'.
So YOU want to TAKE CHARGE of your own illness?
Go back to the diet I briefly described yesterday, and begin to think about how to change your own diet. Get help from a good dietitian. It may not be fun, but it may help your TM. Is there any evidence for that yet? No, not really. Someone needs to be doing this. BUT, will you come to harm? No, probably not. Your weight may drop over time, your blood pressure may reduce, your chances of getting diabetes will be much lower, your chances of getting a heart attack may be reduced, you may be less prone to depression. There is a danger, if you are not eating red meat, that you may reduce your iron intake - not good for pregnant women, or those with heavy periods. You may need to take a supplement. Check it out with your dietitian.
Swank, RL & Dugan, BB, (1990). Effect of low saturated fat diet in early and late cases of multiple sclerosis. Lancet, 336: 37-39
An Australian site for recent Dietary Guidelines

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