Hello...My name is Dan. I am a 48 almost 49yr old husband and Dad of 3 amazing kids. I live in Vermont.
I received an initial diagnosis of ALS yesterday after an EMG. It showed "widepread denervation in multiple muscles in all extremities, left arm most affected, with motor unit changes in some of those muscles. Conduction times are normal." I realize its not officially ALS until a 2nd diagnosis so I hope my post here isn't premature. If so, I apologize.
I am working on getting a 2nd opinion but looking at significant wait times. Hoping a a few pulled strings get me in earlier.
In hindsight my symptoms started with weakness in my left arm over a 18mos ago. Didn't think much of it. An old shoulder injury cropped up a year or so ago and that lead to muscle twitches starting in my left shoulder/back, bicep and forearm starting around March/April. The twitches spread pretty rapidly all over my body except in hands, neck, face. I also developed tight hamstrings that cramped if I kneeled and a left calf muscle that was weak resulting in drop foot. The drop foot comes and goes depending on my stretching of my legs. Recently, I've had them in my hand, neck and forehead. Strength, feeling and coordination in my right arm and leg appear stable despite twitching.
I've been crying non-stop for more than 24hrs terrified of my future, the pain of my family and the unknown future. I have no idea how I will tell my kids other than just tell them. They are old enough to understand, but 12yr old...well he's a 12 yr old.
I don't really know what else to share. I have my EMG results if anyone's an expert at analyzing how far along I am. I hope to learn more about what to expect, how to help my family and learn more about key markers in progression of this shitty prognosis and find kindred spirits in this small, unique community.
Thank you everyone....be well.
I received an initial diagnosis of ALS yesterday after an EMG. It showed "widepread denervation in multiple muscles in all extremities, left arm most affected, with motor unit changes in some of those muscles. Conduction times are normal." I realize its not officially ALS until a 2nd diagnosis so I hope my post here isn't premature. If so, I apologize.
I am working on getting a 2nd opinion but looking at significant wait times. Hoping a a few pulled strings get me in earlier.
In hindsight my symptoms started with weakness in my left arm over a 18mos ago. Didn't think much of it. An old shoulder injury cropped up a year or so ago and that lead to muscle twitches starting in my left shoulder/back, bicep and forearm starting around March/April. The twitches spread pretty rapidly all over my body except in hands, neck, face. I also developed tight hamstrings that cramped if I kneeled and a left calf muscle that was weak resulting in drop foot. The drop foot comes and goes depending on my stretching of my legs. Recently, I've had them in my hand, neck and forehead. Strength, feeling and coordination in my right arm and leg appear stable despite twitching.
I've been crying non-stop for more than 24hrs terrified of my future, the pain of my family and the unknown future. I have no idea how I will tell my kids other than just tell them. They are old enough to understand, but 12yr old...well he's a 12 yr old.
I don't really know what else to share. I have my EMG results if anyone's an expert at analyzing how far along I am. I hope to learn more about what to expect, how to help my family and learn more about key markers in progression of this shitty prognosis and find kindred spirits in this small, unique community.
Thank you everyone....be well.