Old 12-05-2007, 03:51 PM #16 (permalink)
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I think that the diagnosis of ALS is not an exact science. Some people present with certain symptoms and have read on the internet that they probably have ALS or some other MND. They become convinced the doctor is a quack (which some are) but there can't be that many BAD Neurologists. Statistically speaking the medical schools can't be turning out that many idiots. The problem lies in the disease itself. I think that the disease must mutate among different people. How else can you explain someone who dies in 6 months and someone else walking with a walker 6 years later. That is with no REAL treatment. If you get cancer or heart disease and get no treatment you will die. With ALS you have no real treatment and it is hard to get a definitive diagnosis because of the variables of the disease. Cancer or heart disease doesn't really have as many variables. Don't distrust your doctor. He just might not be seeing enough to give you a death sentence yet. Give him time. Hopefully you'll have plenty of it.
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Old 12-05-2007, 07:09 PM #17 (permalink)
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I agree with my neurologist who believes that what we call "ALS" is actually many different diseases that share one common characteristic: unexplained death of motor neurons. Since this problem could be caused by many different agents (genetics, toxins, autoimmunity, trauma to the nervous system, etc.), each case progresses differently simply because it is a different disease. This can also explain why research and clinical trials have so far been so frustrating, since one person's motor neuron death is caused by an entirely different agent than another's. Grouping PALS by symptoms and pattern of progression could help establish subgroups that could perhaps help identify the various causes. This is how PLS and PMA are differentiated. I wonder if any researchers are taking this approach to identify other subgroups within ALS.
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Old 12-05-2007, 08:46 PM #18 (permalink)
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Hello all,
Agreed ALS seems to be a different thing in so many, some quick progressors, some slower, som show definite symptoms, some are so very vague. I agree if this were cancer and the doctor said no cancer well then we would not have cancer, but with this disease of exclusion thing we are just hung out to dry, while everything else is ruled out, or we have progressed enough to be as clear as the nose on the doctors face.
This is a tough road we are all traveling. We can do it together...
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Old 12-06-2007, 03:12 PM #19 (permalink)
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John,
My favorite beer is Miller Lite; try saying that.
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Old 12-06-2007, 06:01 PM #20 (permalink)
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Pappy,

More importantly, can you drink it?
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Old 12-08-2007, 07:34 AM #21 (permalink)
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I am late getting in on this conversation but Al touched upon a good point. A DX of ALS is basically a death sentence. Any doctor-guack or not- is going to need to be very sure before he or she hands out that DX. And doctors are scientists- which is an exact profession. You factor that in with the fact that there are no tests which determine ALS and the delay in giving a DX makes sense.

I agree- it is best to focus on the people and things that bring joy. And a little Miller Lite once and awhile can't hurt!
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