Flail arm syndrome

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ccordone

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My husband has many symptom of Flail arm syndrome. The Drs said he probably has ALS in arms. How long can you live with this? Does it eventually take over your body like ALS?

Colleen
 

zoohouse

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Flail arm syndrome is a distinctive clinical variant of ALS that is strikingly more common in males and may have a better prognosis. From what I have read they have slower profession, so survival of patients with flail arm syndrome might be better than those with other forms of ALS as the median survival in the flail arm group was 57 months, compared with 39 months in the ALS group.
Remember this does not mean he will die in 57 months, as you may note there are many on this site that have had ALS for 10...... years. Never give up hope, Tim and I won't with his ALS.
 

lgelb

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Studies of the flail arm variant, which my husband has, reveal that some cases disseminate to the rest of the body and others do not. An EMG demonstrating abnormal recruitment/motor units in limbs or regions other than the arms would suggest the former, as was my husband's case. It is also important to note that "median" means half above and half below the measure reported, so half the FA group had lived longer than 57 months at the time the data were analyzed.

That said, the case series vary in terms of criteria used. One working definition is arms-only symptoms for 18 months or more. Obviously that "stacks the survival deck" in studies.

Hope for the best (progression stays limited to arms) and plan for the worst ("standard" ALS).
 

affected

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Hi ccordone,

One of the things with ALS is that they can generalise by classifying into types like flail arm or bulbar onset, but every individual really does have their own individual journey through it.

I find this amazing myself, we can't take anything for granted here.

I have found personally that just taking each day at a time, and living each one to the best we can and enjoying it is better than trying to second guess where we might be with the disease next week or next month. My PALS has an attitude of 'it will be what it will be', and I'm learning to live that way truly too.
 
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