My introduction continued

A little bit about my ALS. My ALS was difficult to diagnosis because of my unusual presentation. My first symptom was a hoarse voice. I attributed that to my allergies. However a few months later I began slurring some words, not many but those words were very hard to say. I remember trying to tell someone to fax something tomy office but I couldn't say fax. It came out "fa", no "x" sound no matter how hard I tried. When a co-worker told me I was slurring my words I knew it was time to find out what was wrong.

Thus began the marathon of different doctors and many, many tests. Because my only obvious symptom for quite a while was the deterioration of my voice I was a puzzle. At first I was sent to an ENT (ear, nose, and throat doctor). The theory then was that I may have a rare nervous system disorder called spasmodic dysphonia which effects the vocal cords. This is very treatable. Most often botox injections at the site of the "paralyzed" vocal cords provides relief. No such luck. The ENT said I didn't have spasmodic dysphonia and referred me to a neurologist.

The neurologist, my first, did EMGs, an MRI, blood tests, and physical exams. The possibilities were Myasthenia Gravis or ALS and something else I can't remember. Because I didn't yet have some of the more obvious symptoms of ALS such as weakness in my arms or legs this doctor was willing to give me a definite diagnosis although he said Myasthenia Gravis had been ruled out. Unfortunately an ALS diagnosis is often obtained by ruling out everything else. I asked for a referral to an well-respected ALS expert (neurologist #2) at the University of Wisconsin Hospital in Madison.

Finally I received a definitive diagnosis of ALS, about 16 months after I first sought answers to my voice problems. I felt a mixture of relief and fear. I am a nurse and had suspected ALS for quite a while. As a compulsive researcher I already knew the prognosis was bad. I was and am determined to beat the odds and so far I have. It has been almost five years since my initial symptoms and I am doing better that expected. The common time-frame is ALS patients live three to five years. So far so good!

I still have very good fine motor skills hence my ability to type fairly quickly. That is a big thing because I post on message boards, e-mail, and use a hearing carry over (HCO) tty device to "talk" on the phone.

I have so much more to say. As they say, "The saga continues".