1. karen sue carr karen sue carr United States says:

    I was diagnosed in the mid 1980s with fibromyalgia along with chronic fatigue. Like most I was told to learn to relax, to watch what I eat, get more exercise and generally try harder. Between pain chronic exhaustion a very tough job while raising two children with their own health issues I could barely make it through my days without thoughts of ending my suffering.

    Fast forward, my children are grown. Both had odd issues as kids. Sensory overload issues, night terrors, sleep paralysis, clumsiness as well as quirks like painful joints, difficulty sleeping attention deficit and more. Fast forward their health as well as mine continue to deteriorate.

    A light bulb moment occurs and I realize something genetic is going on with my self and my children. It took me months of research but I made our diagnosis. A considered rare mineral metabolic disorder, an ion channelopathy that supposedly very few people have but for some reason tons of research was being done. Ion channel disorders are periodic in nature. You have good days or good moments only to descend back into the abyss of brain fog chronic pain periods of muscle weakness and for some but not all periods of paralysis. Every one of my quirky issues could be explained by this diagnosis. Andersen Tawil Syndrome.

    From my crooked retrognathic jaw to my crooked toes, muscle weakness and strange or paradoxical reactions to many meds. Literally life changing things occurred with in days of beginning a neuroprotective high fat, moderate protein, low carb, low sodium diet. Along with this diet I also began supplementing other minerals and vitamins associated with the metabolism of potassium. The B vitamins, vitamin d, magnesium and several thousand milligrams of potassium daily. Supplementing potassium for most non medical individuals actually scares many persons. It can be dangerous if an individual has unhealthy kidneys. However, most Americans do not get much more than half of the RDA of potassium daily.

    This mineral is vitally important to the function of nerves as well as the basic function of most cells in the human body.  Three days on the neuroprotective ketogenic diet with supplementation of vitamins and potassium otc my pain literally ended. Muscles once stiff and unresponsive were supple again. My sudden attacks of sleepiness and sudden weakness also were much improved. I took my results to my physician as well as contacting a world expert researcher and both agreed that this was indeed my diagnosis. I was told I probably have many ion channel mutations. One or more of them probably are responsible for most of my signs and symptoms. Just wanted to share so others might google and learn about these disorders.

    Perhaps you can find something that fits you better or even an approach that may greatly improve the quality of your life. There are over 7000 rare disorders. Most physicians are unwilling to do the scut work to figure out if your issues may indeed be something that can be made better.

    If you have little physical quirks along with your pain your exhaustion your exercise intolerance perhaps you should seek an appointment with a genetic counselor. Insist on it. Do some homework there may be something out there that is the actual correct diagnosis.

The opinions expressed here are the views of the writer and do not necessarily reflect the views and opinions of News-Medical.Net.
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