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Gizmosdaddy

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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
 
Believe your doctor and stop trying to second-guess him by attempting to self-diagnose using the Internet. If you don't think he is giving you enough information, feel free to seek a second opinion, but realize that it can take several months (more than three) and many, many tests to diagnose some neurological and muscular disorders.
 
Chris,

With all of the testing you've had done that has come back negative for a diagnosis of ALS, I'd be pretty happy!

Your condition could be caused by a myriad of diseases/disorders or syndromes. Give the doctors the time they need to sort through it all and eventually, they'll probably figure it all out for you.

In the meantime, please take solace in what the doctor had to say about it not being ALS.

Kim
 
Chris, it doesn't sound anything like the normal onset of ALS, which is a very slow, subtle and "methodical" disease, nothing like what you have described.

I assume, having ruled out ALS, MS and MG, your professor neuro will be investigating other possible causes of these distressing symptoms. If you feel it necessary to get a second opinion and repeat all the tests done so far, go ahead, but it would seem more productive to move past the things already ruled out and try to discover what is actually causing all this, rather than re-doing tests over and over for a very unlikely disease.

Doing tests won't make you feel better, and re-doing them won't either. Finding the real cause and treating it will.

(P.S. I think tenure is highly over-rated as a guarantee of excellence, but that is a different topic.)

Good luck. Hope you get some relief soon.
 
Thank you for your posts. I have found solace in the Doc's findings and he has arranged for me to see a Neuro Psychologist to see if I am manufacturing these symptoms ( albeit that sounds wierd). I will update on the progression if there is any more and hope to find out what is going on. Thanks for the support and keep strong. Happy Holidays.....

Lots of Love,

Chris
 
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