The Unknown

I have written on this blog before about the genetic testing my neurologist recommended. I waited six months or so for the test to come back and at least another month while the results sat on his desk. Well, I finally got my point across to him that I wanted to know what the test […]

Hurry Up and Wait

When I first met with my neurologist, he said that my condition (Dystonia) is genetic—not ands, ifs, or buts about it. So, he wanted genetic testing, and I had blood drawn for a genetic test on October 26, 2015. The company charged $20,210.00 for the test, and, fortunately, my insurance company paid in full. When […]

Rare Disease Day

February 29. The rarest of all days. It doesn’t matter if it’s leap year or not, the last day of February is always the rarest of all days in the year – the only 28th day of a month that ends a month. Because this is the rarest of all days, this is Rare Disease […]

Annus Horribilis

On November 24, 1992, Her Majesty Queen Elizabeth II attended a banquet at Guildhall to mark the 40th anniversary of her accession. The Queen gave a speech and she famously said, “1992 is not a year on which I shall look back with undiluted pleasure. In the words of one of my more sympathetic correspondents, […]

The Vampire Cometh

Today is the day. The vampire (aka phlebotomist) will be here at the house in just over two hours to draw my blood and ship it to Maryland for genetic testing. In four or five months, we should know the results. The neurologist explained that even a negative result does not mean I do not […]