Gizmosdaddy
New member
- Joined
- Dec 20, 2009
- Messages
- 3
- Country
- CA
- State
- Ontario
- City
- Maple
Hi,
Since September of '09, a series of symptoms has brought me to the conclusion of suspected ALS. I am 35 year old male, married with 2 kids who was in pretty good shape. Then one day, I got up from the couch and my entire right side felt clumsey. Very similar to the feeling of a limb that has fallen asleep and is just getting the blood back. Heavy and somewhat unresponsive. My arm and leg started to bounce of of things. There was no numbness, weakness or pain at the time. My wife thought it might be a stroke so I went to the ER and my CT was clean and I had no sensation problems. Then a few weeks later, I started getting twitches and spasms everywhere. I'm currently getting about 100 - 200 a day usually at rest but not always. Then in the beginning of October I started getting weakness and fatigue everywhere. Most notably in my jaw, tongue, throat ( swallow and voice ), hands, feet, calves and wrists. My legs, arms and shoulders have also grown weaker. I can still use all of these muscles but they fatigue easy and are ALWAYS stiff. Simple things like typing and climbing stairs are getting more and more cumbersome. I make all kinds of typo's now and my joints in my hand hurt when typing or any kind of work. Using my arms and legs feels like I'm using sprained muscles. Initial power seems OK but anything past 10 seconds of use starts the shaking and cramps. My jaw is getting stiffer and stiffer to the point it will not chew properly and seize after 5 minutes or so. My speech is getting gravely and my tongue fatigues from talking past 5 minutes. I am currently seeing a speech therapsit to help with chewing and swallowing as I asperate alot when drinking and eating. No here is why I'm frustrated and confused.
I've had 2 EMG's and 2 MRI scans, Evolked potentials, and a nerve velocity test and all have come back clean. My Neurologist ( A professor of Neurology at U of Toronto no less ) says that it is not ALS, MS or Myasthenia gravis. They did not capture a Fasciculation during either EMG. During a physical exam, my reflexs are normal, negative Babinski and show no signs of "true" weakness with the standard neuro exam. I want to believe my Doc but I am not feeling physically any better, but instead worse and worse, to the point where I have starting to talk less because my jaw is so tight. Can ALS present everywhere like this? From the investigations I've done it usually starts here or there. My Doc has no idea what is wrong. Should I seek a second opinion over a neuro doc who is this tenured and runs the ALS/MND dept at a top hospital? Any idea's out there?
Chris
Since September of '09, a series of symptoms has brought me to the conclusion of suspected ALS. I am 35 year old male, married with 2 kids who was in pretty good shape. Then one day, I got up from the couch and my entire right side felt clumsey. Very similar to the feeling of a limb that has fallen asleep and is just getting the blood back. Heavy and somewhat unresponsive. My arm and leg started to bounce of of things. There was no numbness, weakness or pain at the time. My wife thought it might be a stroke so I went to the ER and my CT was clean and I had no sensation problems. Then a few weeks later, I started getting twitches and spasms everywhere. I'm currently getting about 100 - 200 a day usually at rest but not always. Then in the beginning of October I started getting weakness and fatigue everywhere. Most notably in my jaw, tongue, throat ( swallow and voice ), hands, feet, calves and wrists. My legs, arms and shoulders have also grown weaker. I can still use all of these muscles but they fatigue easy and are ALWAYS stiff. Simple things like typing and climbing stairs are getting more and more cumbersome. I make all kinds of typo's now and my joints in my hand hurt when typing or any kind of work. Using my arms and legs feels like I'm using sprained muscles. Initial power seems OK but anything past 10 seconds of use starts the shaking and cramps. My jaw is getting stiffer and stiffer to the point it will not chew properly and seize after 5 minutes or so. My speech is getting gravely and my tongue fatigues from talking past 5 minutes. I am currently seeing a speech therapsit to help with chewing and swallowing as I asperate alot when drinking and eating. No here is why I'm frustrated and confused.
I've had 2 EMG's and 2 MRI scans, Evolked potentials, and a nerve velocity test and all have come back clean. My Neurologist ( A professor of Neurology at U of Toronto no less ) says that it is not ALS, MS or Myasthenia gravis. They did not capture a Fasciculation during either EMG. During a physical exam, my reflexs are normal, negative Babinski and show no signs of "true" weakness with the standard neuro exam. I want to believe my Doc but I am not feeling physically any better, but instead worse and worse, to the point where I have starting to talk less because my jaw is so tight. Can ALS present everywhere like this? From the investigations I've done it usually starts here or there. My Doc has no idea what is wrong. Should I seek a second opinion over a neuro doc who is this tenured and runs the ALS/MND dept at a top hospital? Any idea's out there?
Chris