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roberts

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Hi. I wonder if doctors and researchers use these forums since my questions are quite specific
and technical...but I don't know of any better way to poll the huge ALS community. I must say
that I have learned a lot about this cruel disease recently, but unfortunately not enough :(

My dad was sadly diagnosed with ALS Nov 16 (he is 65). He had blood, cerebrospinal fluid, EMG,
and MRI tests done. Abnormal EMG results (and general weakening since March) are the main
reasons for the ALS diagnosis.

But, 0.35nmol/L neuronal (voltage-gated) K+ channel antibodies were detected in his blood
serum. The doctor believes this is not related to his weakness, but if pressed for hope, he
admits that some underlying cancer could be a singular cause for everything.

From Google searches, it does seem like these same antibodies are found in many ALS patients
and then also considered unrelated (maybe the body coincidentally fights other temporary
illnesses at times). I also have come to understand that Neuromyotonia is a possibility, but
my dad's symptoms don't match so well. Has anybody else in these ALS forums found these
same antibodies? Did the doctor say anything differently?

Besides the cancer explanation from the doctor, I wonder if any other singular cause could be
explained including the antibodies. For example, on the surface, it seems K+ channel antibodies
should interfere with the basic axon ion pumps. What is the deeper reason for why these
antibodies alone wouldn't disable my dad's neurons? Maybe there are simply too few of the
antibodies to have any significant muscle effect. Also, why do cancers tend to create K+
channel antibodies? Maybe cancer cells usually use an ion pump like a neuron. Is there any
other theoretical tie between ALS and these antibodies?

By the way, this is a strange coincidence because I had similar fatigue symptoms for most of
2010 (I thought I had the swine flu because it started with coughing and digestion problems),
so I thought he might have caught the same thing. I now think our diseases are different, but
there's still a slim chance that my dad does not have ALS and this could have played a role.

Thanks for any advice!
Robert
 

notme

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I'd suggest you ask for a colonoscopy and CT of his lungs as those are the two most common cancers to spread. Wouldn't hurt to ask for a CA125 as well.

I'd imagine you were asking about parineoplastic syndrome, which is basically where the body's nerves are affected adversely by an underlying cancer. (I may have spelled it wrong--my mind isn't what it once was)

Can't answer on the main question.
 

roberts

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@notme Thanks for the advice. Colonoscopy and lung CT scan have both been done too with no sign of cancer (but I don't believe any CA125 blood test was done), so we have no reason for the antibodies. I wish you the best!
 

roberts

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@Begnus There's no sign of encephalitis (like amnesia), so I doubt that direction will work well. By the way, in similar research, I've learned that these antibodies are often correlated to pain. My dad had a cortisone shot a few years ago for serious back pain...so this would cause me to ignore the antibodies more and unfortunately accept ALS as a correct diagnosis.
 

Luke

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You should also post this question at the ALS TDI forums, as they are a research organization and their forums have a more scientific, technical focus.
 

roberts

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11/2012
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@Luke Thanks! I took your advice and also added two stats.
 
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