Diagnostics Question - Desperate!

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kazzy

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Mar 22, 2006
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Hi there,

In the process of being diagnosed last thing left is the emg.

Have already had a ncv which was normal. Does a normal ncv rule out als?


Thanks, Kazzy:confused:
 
Kazzy,

The generally accepted criteria for diagnosing ALS, known as the "El Escorial" criteria, contain a detailed explanation which should answer your question:

http://www.wfnals.org/guidelines/1998elescorial/elescorial1998app3.htm

Briefly, the EMG is the crucial test, it will reveal whether there is evidence of muscle denervation. The NCV can be normal or near normal in an ALS patient. The diagnosis must be made in a clinical context which includes detailed history of the patient and tests to rule out other diseases. The EMG, while critical, does not occur in a vaccuum; ALS is a "differential diagnosis", meaning there is no one test that can diagnose it. Nevertheless, a patient who does not exhibit the requisite signs of denervation per the EMG almost certainly does not have ALS.

Until the EMG is performed, you cannot be properly diagnosed as having ALS. So don't panic or talk yourself into a diagnosis which God willing will never be made in your case.
 
thanks dave

Hi Dave,

Thanks for the reply it was very helpful. :-D

Can't get in to see neuro until June as we have moved interstate and have to start over again so it helps to gather information while I'm waiting. When one is waiting for answers such as these 9 weeks can seem like an awfully long time!

I see you didn't get any straightforward answers in a hurry having taken 3 years for a diagnosis. I have probably been having symptoms now for about 3 years and it's not fun! I want to know what's happening to me but then again if it's als I don't want to know as I have a hubby and 7 beautiful children!

How have you been going since your diagnosis, is it a slow progression? How did you cope with diagnosis, etc? I hope and pray that you get the help you need and things go well for you and that you find joy in every moment in spite of your disability.

Kazzy,
"What you focus on in life is all that you will see."
 
Kazzy-

How did I cope with the diagnosis? Still am:) Truthfully, I was in total shock for two days, then could not stop crying for about the next two weeks. After which I got online, started looking for answers, and found boards like this one which have been a godsend. I have tried to learn as much as possible and control my own treatment as much as possible. I see a psychologist once a week and take Celexa, an anti-depressant, for mood stabalization.

My current condition is not terribly disabling. Muscles in both hands have atrophied and my ability to move my fingers independently has largely been lost. I can still cut most foods and can still write if I go slowly. I can no longer touch-type, I'm back to hunt-and-peck with the few fingers that still work. I have voc-rehab devices to help with buttons and zippers. My upper body strength is a bit less than it used to be but still pretty good. No loss of function in my breathing, chewing, swallowing, talking or walking as of yet. I drive with no difficulty. I have fasciculations all over my body which are only bothersome in that they portend denervation and ultimate loss of function, but hopefully that will happen very slowly.
 
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