ALS TESTING AND INFORMATION (NCC)

[Guest guest]

I was tested for ALS since my brother died from ALS and since I had MANY

similar symptoms with the exception of severe!! Pain that was not constant

with ALS until the muscle wasting is more progressed and the twitching and

spams in ALS are unbearable with NO stopping the further along. The tests for

ALS(speaking from ALL my brother had done and myself as well are:

SEEPS

EEG

EKG

every type Nerve Conduction tests you can imagine

Speech is one of the most common things to go first so they look at speech

patterns that are more specific to ALS but CAN mimic those of SEVERE Stroke.

Drop attacks are very uncommon, BUT falling down is common and there is a

difference.

SEVERE Dysphagia which can mimic other Nuero disorders

Overall however keep in mind that unlike MS ACM or SM. or ANY other types

even Lupus, ASL is so insidious and the Muscle wasting it TRULY the most

Prominent Symptom one sees with Progression ranging form Rapid to even

stopping at some point for a while or a long while(RARE), more than about 75%

WILL progress at a VERY rapid rate unlike " Hawkins " the Prominant

Author, who has stayed at his progression state for quite a long time, this

as I said is RARE.

Also, if you are a woman asking this the ratio is not 50 /50 its more like

70/30 and is more common to run in another family member who is female than

the General population of Females being born with this Gene, but regardless

it can take SEVERAL months and months of doing these tests over and over to

see a TRUE pattern of wasting, which starts in one area then moves eventually

to the heart and Lungs, but DOES not affect the mind, expect for possible

depression for obvious reasons.

Hope this helps anyone who may be tested for this Disease and alleviates some

of your fears of the Unknown. Since they Know so much more about ALS today

(THANK GOD) they are able to test more frequently and if you can believe it

they are more knowlgeabe about ALS today at this moment than they are about

ACM and or SM. for which I personally am glad because the CURE to even LIVE

from ALS is so important, at least they are trying to Stop the Progressions

in ALS. I believe our Disorders too will take some time for better answers

but in the meantime our World has come a long long way and by Supporting ALL

Neurological Disorders and Diseases and SCI and Brain Injured, MS, Lupus,

ACM, SM,SB, SC, BI and on and on, we will ALL benefit one day, so try not to

let frustrations of lack of help or funding rule your life, we are fortunate

to live in this time.

Peace all

Dawn in CO