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Ezgon

New member
Joined
Sep 2, 2008
Messages
3
Reason
Friend was DX
Diagnosis
09/2008
Country
US
State
WI
City
Green Bay
My wife was diagnosed with Anterior Horn Cell Disease just about 2 years ago now. They say she doesn't have ALS they just tell us it is Anterior Horn Cell Disease but that a exact diagnosis is almost impossible due to some other issues. My wife had scoliosis when she was 16 and has 2 bars in back and some other hardware which blurr the results of an MRI.
She also was diagnosed with Arnold Chiari Malformation in 2000 and had an operation for that.
She has had 3 EMG's and results are "...skewed due to the trama she has had with her spine and the Chiari."(not sure what that exactly means and they say that the EMG won't give a correct reading due to nerve damage from the Chiari and the problems with the scoliosis.)
Over the past 2 years she has gone from walking with a pronounced limp to using a walker full time. She has had 3 muscles tear away from the bone...the major one in her thigh which they said would just atrophy away. (if that is correct...) They said with her condition it would do no good to operate on it to fix because it would just tear again. Most recently she has a tear in the muscle on her left side and after she eats she gets a bulge on her side where the muscle is tore. Again the doctors said it is a very difficult opreration to repair and with her condition no assurance it wouldn't tear again.
Lately after eating she has a cough that last for about an hour. She has said that it feels like there is something in her throat. We tried to keep track of the foods she ate to see if it had to do anything with the types of food. It doesn't matter what she eats - she has this cough for about an hour.
She has severe muscle atrophy in her left hand and has been told that she has what is called monkey paws. (curling of the fingers.) She is steadily getting weaker in the legs and now in her arms. At times she has difficulty getting her breath. They tell us that the problem with her getting her breath is due to the spine probably pushing against her lungs?
Seems to me that there is more here or there are things we are not being told. Not sure where to go from here. Wondering if any of this sounds familiar to people...I want to help but don't know where. At times she is more than willing to accept the help...then there are other times that she gets really upset if you try and help. Short term memory seems to be an issue also - along with some mood swings. I have always discounted the mood swings to having this awful disease you have to live with and I know it would make me mad...plus scare me to death.
Just wondering and looking for ideas.....
Thanks in advance for any help!
EZ
 
I beleive Anterior horn disease is another way to say lower motor neuron disease, someone correct me if I am wrong. There are a few of these lower motor neuron diseases, I have been diagnosed with one, called Monomelic Amyotrophy. I think it would be hard for the EMG to differentiate problems with her spine and the Anterior horn. Progression is the key, I beleive your local MDA clinic will be able to help.
 
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