Did Nelda Buss have ALS?

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KimT

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Vert interesting, Jethro. Thanks for posting.
 

Firefighter58

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I agree, very interesting.
Al
 

jethro

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als, as my neuro said, makes disaster in one year. "wanna see?" (he wanted to take me to the room with als patients) "no, thanks." i said.
this woman was diagnosed JUST 6 months after symptoms onset which occured fast like thunder.
one year after onset, her muscles started to improve.
"However, since approximate 1 year after onset, her muscle weakness has gradually been getting better."
article's conclusion: "It should be noted that clinically diagnosed cases of ALS may rarely recover spontaneously."
BUT
first sentence in article is:
"We report a patient with motor neuron syndrome similar to amyotrophic lateral sclerosis (ALS) and with spontaneous recovery. "

so, something is similar to X, but it should be noted that clinicaly diagnosed cases of X may rarely recover spontaneously.

?
 

KimT

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Yes, since ALS is a default diagnosis after ruling out all possible mimics, my guess is that it was either a mimic or a reversal. I read a book by a pastor who had ALS for 15 years. He worked for the first five. Others have lived without invasive ventilation for many years only to die of another non-related illness. Are these mimics or are their bodies somehow healing? That leads me to my main point. Are some of us here experiencing mimics? I suppose some of the mimics can be terminal just like ALS.

Many people believe ALS is a group of conditions creating the "perfect lethal storm." What about the cluster areas?

Are our contributions being used properly?
 

jethro

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@kim, i think that ALS is a basket of many neuropathic diseases. all are lethal, and all looks almost the same, but i think that cause can be expressed very simply, so als is a collective name for something non explained/understood. when i was healthy, noone understood me, so i often drunk a coffe in a bar - alone. to be honest, i'm not surprised that such a weird thing as als is shot me. neither are others. i was alone, i am alone, i will die alone. ace is with you. lucky you.
 

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My husband has per our Dr. “other non specific neuropathy” and “unspecified nerve conduction abnormalities” stated to be “ in addition” to ALS. I don’t think these issues are “ in addition” at all. The bundle all together is his version of this thing called ALS which is probably in reality a bundle of diseases.

No one will ever convince me that Steven Hawkin lived 50 years with the same disease that liked Lou Gehrig if less than 4.
 

jethro

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@lkaibel totally agree! i dont even dare to say it to my dr. that SH didnt have als!!!!
i met a guy in a hospital with a SAME typical symptoms of ALS, but he was diagnosed with "unspecified neuropathy" just because he felt first symptoms in 2009. progressive but slow weekness, fascic., loss of muscles, brisk reflexes, tenar disappeared, loss of motor neuron...
i think that they categorize neuron disease by particular survival expectancy. hence, SH is someone who doesnt belong here at all.
if they sure that progress is agressive, you can bet that they will categorize you with ALS.
urine marker for ALS, called p75 will difere neuropaties. i think that hospitals are affraid to use it bicause of many misdiagnosed.
 
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