ALS Testing There is none. No easy diagnosis or test, it takes - TopicsExpress



          

ALS Testing There is none. No easy diagnosis or test, it takes several months of eliminating everything else, all while symptoms continue to progress. In the end, it was obvious….aside from being young, my symptoms are a classic case of ALS. I’m going on the assumption everyone has taken the time to learn what ALS is and knows the path we will travel. I started my diagnosis journey with an orthopedist in January to treat my “shoulder injury” that began September 2014. I assumed I hurt my shoulder from holding my sweet hunk-a-lunk nephew all day or transporting him in the gazillion pound car seat carrier—only thing we could come up with. I did PT and continued to worsen. Ortho then ordered an EMG and results showed nerve problem in all my extremities—that could mean a wide range of things though. I was sent to my first neurologist in mid-March who mentioned Lou Gehrig’s disease when he evaluated my EMG results; I’d heard of it, but didn’t know what it was. Boy was that a punch in the gut when I googled Lou Gehrig’s disease!! He repeated the EMG and said nerve damage in shoulder (brachial plexus lesion), “not a gnarly disease.” Come back in 3 months. *relief, I’m gonna live* But then questioned how could two tests, three weeks apart be on the opposite ends of the spectrum. Hubby and I thought he was a quack and didnt return; I could write a book on that experience one day btw! Tons and TONS of tests and doctor appointments to follow: Xrays of neck, spine, shoulder—all clear. 6 MRIs including: brain, cervical spine, shoulder, neck, brachial plexus, and another brain—all clear. Blood tests, lots and lots of blood test. It was strange to want test positive something in my labs, in my MRI, anything in order to rule out ALS. Finally, I was referred to a muscular neurologist who is the best in town at EMGs and also treats, I mean sees, ALS patients. Everything else ruled out, he performed a third total body EMG and the results showed nerve relay was affected in not only my extremities, but also my breathing and swallow nerves. He was able to do a muscle ultrasound and see my fasciculation (muscle twitching). In addition to my progressive symptoms (unexplained muscle weakness in my left shoulder, arm, and hand; muscle twitching in all extremities; vibration in my mouth) the final doctor had the answer after spending 5 ½ hours with us. I was diagnosed with ALS on June 5th, 2014. (Oh.My.God!!). Our second opinion at a nationally certified ALS clinic was not only ALS, but “faster than average” based on how quickly it progressed down my arm to hand (OH.MY.GOD!!) —so there ya have it, ALS diagnosis in a nutshell. Of course, I’ve left out lots of other appointments in between, but included ones that give pieces to the puzzle. I counted yesterday, 24 doctor consultations and tests in a six month time span to come to three letters—ALS. All wrapped up in one paragraph. – Blessed by our faith, we feel stronger from your prayer and support.
Posted on: Sat, 23 Aug 2014 13:07:52 +0000

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