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May 18, 2007
Learn about ALS
Los Angeles
I have seen topics related to this one several times. To start, ALS is a disease that is extremely rare yet it can appear so common in places such as this site. I think ALS has an incidence of 2-4/100000, which makes this condition rare. 80% of these cases are sporadic and bulbar ALS is even rare at about 10% of these cases. ALS is taken lightly in the medical community because it is seen as often. Most people will live a lifetime and never met someone with this condition. Doctors are not well read and many will spend their career without ever seeing a case of ALS.

All ALS specialists take their jobs seriously and will try to follow a protocol that fits best that is recommended by the college of neurology and the NIH. Clinicians do not workup a case unless objective information presents for further follow-up. 80% of patients present with spasticity adn hyperreflexia (upper motor neuron signs) in the setting of progressive muscle wasting and weakness (lower motor neuron signs). Which means unless you have both upper and lower motor neuron signs and symptoms the diagnosis of ALS will not be given. This is why some suffer from these symptoms but are not diagnosed with ALS because you must have signs of both.

painless, progressive weakness is the usual presenting signs of ALS. Which is odd to me since this site many complain of pain. I am still perplexed by this. This condition is usually focial in onset, weakness then spreads to contiguous muscle groups. Weakness is accompanied by muscle atrophy. Twitches are not a major symptom in many patients with ALS until muscle begins to die off.

I hope this helps people who do not know why I diagnosed isn't just made. We would not like to diagnosed someone and find out later that someone suffers from a curable condition.
Although it would seem to be an uncomplicated diagnosis, many of us may be in the beginning stages of ALS and may not overtly manifest symptoms such as clinical weakness, for example. Also, there is so much variability in presenting symptoms, although there is a normative pattern of presenting symptoms. In my case I experienced weakness before fasciculations, for example.
You can't treat via statistics.
VMD is quite right. Every person with ALS is different, suffers differently. The pain comes from cramps and joint pain after some atrophy. Tendons and ligaments are stretched.
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