ALS? MY FRUSTRATION:  Keri’s mother, Joan Brown

BE WARNED:  My words are not usually what people in the medical field want to see, because I do not accept what I am told to accept, nor do I write HERE, to spare feelings. Sometimes I unload.  (J. Brown)

As our nation was again reminded of a disease that took the life of a man so well known that the disease became known by his name, Lou Gehrig, we look at the 10s of 1000s of other victims of ALS. In Britain, it is called Motor Neuron Disease, which in the US, covers more than jsut ALS, but all are debilitating. All are not fatal, as is ALS.

REGARDLESS of what you sometimes read, there is no TEST to see if you have ALS. There are eliminations. But there’s the rub… bloodwork will only show up positives for what they are tested for. THERE IS NO TEST for Lyme. There is no test for MOST viral infections, just a few.

For instance, do you know that a staph infection (something that most people have at some time in their lives) is harmless, until it enters the body? You carry it around on your mouth, your hands, your bottom, your clothes; towels, cushions.. it lives an extraordinarily long period.

Do you know how EASILY it can enter the body? Many S.I. are caused by lack of sterility in hospitals, no less! Once there is even a small break in the skin, a staph infection can occur. And guess what else? Some never completely leave the body, staying there to interact with whatever it meets.

UNdiagnosed, UNtreated, an invasion of many types can morph into ALS. Keri was as normal and healthy as a person comes. From a very bad case of Mono during her college years, and asthma all her life, she gradually began to get infections easier, like sticking her finger on a Douglas Fir Christmas tree. Like allergies that she’d never had before, all of a sudden began to appear. Like she had a rash in the shower only, that showed up on her thigh. Like a pain on that same side in her hip, that traveled down her leg and out her right foot, leaving it paraylyzed. If you know anything about ALS, you know this not remotely how it begins… but then all cases seem to differ.

I’m not a scientist or research specialist, but I don’t need to be, to see a problem here. Why has no one EVER asked questions out of MORE than 40 neurologists, about Keri’s history beyond a form filled out on every initial office visit? Even when I write to research labs and offer what we know and what Keri experienced, why do they blow me off? They are not interested, in what caused this. HOW can you find a cure, without also finding the cause?

Even with cancer, which I currently am inremission for, no one has ever cared about the history of my life, my body.

NO ONE CARES ABOUT ALS!!! That would be, only because it hasn’t hit close enough to home.

If you are, or KNOW of an ALS victim, while you should seek out an ALS Clinic for the latest and best way to handle progression, NEVER give up on testing and looking for what it was that changed, when, and why. DO NOT just trust the word of your family doctor (read the story of Susan G. Komen) or the neurologist you might get referred to.

And don’t believe everything you find on the internet.

BUT NEVER stop looking.