Saturday, July 19, 2014

Has your doctor put you in limbo? Being a patient takes patience

By Erika Rizkallah

Last week I followed up with my neurologist to get the final results from a three-part testing process I went through.

He called me into his office to let me know that my diagnosis is Small Polyfiber Neuropathy, which boils down to this: it hurts to have skin.

Technically it's a nerve disease in the small fibers of the body and there is no cure. Most people have it in the feet and legs but I have it all over. Most people are diabetic or overweight and can improve the pain through lifestyle change, but I'm neither diabetic nor overweight.

My case is considered idiopathic which boils down to this: They are clueless.

So my doctor put me in limbo for six months in the hope that The Mayo Clinic, The Cleveland Clinic or George Washington University would discover the cause. Obviously someone's been doing their research. The bad news for patients like me is that it takes about 10 years of research and clinical trials before any medicine can be prescribed.

So I'm in limbo. My doctor said, "Do you understand what I mean by limbo?" And I said, "yes."
Later I wondered why on earth do I understand limbo? Because it's not an actual place, it's a state of indecision. So I looked it up and it's also a theology, movie, dance and game that people play at parties.

But only young girls are successful, because older people break their backs playing this silly game. My clumsy family has never made it under the limbo stick, no matter how many times we try.

Why am I putting the name of my disease out there? It's been discovered that women with my condition and those that suffer from "pins and needles" or "ants running up arms and legs" often get diagnosed with fibromyalgia.

At any rate, the sensations ARE NOT NORMAL, so if you suffer from them, get to the doctor and see if they can find an underlying cause before more damage is done.

And take heart. Technological advances are making medications safer so that we can have a better quality of life.
                                                           Being a patient takes patience.

The end of a matter is better than its beginning, and patience is better than pride.
                                                                                                  Ecclesiastes 7:8

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