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smcumming

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May 17, 2010
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CALS
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US
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AL
City
new market
My mom has been diagnosed as "probable ALS", per EMG, brain and spinal MRI and with no improvement from "disc treatment". Her symptoms are significant bilateral lower extremity weakness. She recently has had significant swelling in both legs. She can ambulate minimally with a walker, but is at high risk for falling during any weight bearing activity. She does not have any upper motor neuron symptoms at this time. The diagnosis came from an ALS specialist. My question is basically this: If it is probable ALS, what else should we be looking at to either prove it is ALS (besides, wait and see if UMN sx occur). I don't know if it has any connection, but she also has a Vit D defiency, and had noted hearing loss that has become significant pretty suddenly...Any thoughts? Her swelling to me seems to be way more than expected for someone who does still stand and walk (though minimally). Lung and cardiovascular staus is normal. Thanks in advance for any thoughts or comments..
 
Most likely, you would expect to see further progression of the existing symptoms -- continued weakening and eventual paralysis of the muscles that already show weakness, spread of weakness into other parts of the legs that are not yet showing symptoms -- or similar symptoms beginning to appear in other regions of the body -- slurred speech, difficulty swallowing, difficulty breathing (especially when reclining), and loss of fine motor skills in the hands.

There really is no way of predicting which region of the body will be affected next for any of us. Awfully inconvenient for long-term planning and preparation -- definitely! Be patient -- taking a long time to go from "possible" and "probable" to "definite" is a good thing with this disease because it indicates slow progression. The waiting may be maddening, but it beats the heck out of rapid progression. Waiting six months for a definite diagnosis is much preferred to going from trouble walking to virtual immobility in six months.

Hope this helps.
 
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