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andie13

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My Mom has signs of upper motor neuron and lower motor neuron involvement. She began with symptoms in 2001. Falls, broken bones, unable to climb stairs is how it started. She is now in a wheelchair barely able to walk with assistance. She dislocated her shoulder during one of her falls and lost use of her left arm. The nerves never reconnected afterward as we were told they would. Then her left fingers began to contract. She can lift her arm, but other than that she has lost all use. She is now showing signs of bulbar symptoms, difficulty forming words. Her neurologist is sending her to the ALS clinic due to an EMG showing chronic denervation. She has had positive signs for upper motor neuron invovement (Babinski's, clonus) However still no diagnosed. Neuro says she is not sure ALS because progression is so slow. Has anyone progressed slowly?
Thanks
Andie13
 

brooksea

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andie,

My husband was diagnosed in 09/06. Symptoms began 1-2 yrs earlier. He walks fine but has lost fine motor skills in both hands and left arm is atrophied to where it is very weak. Right arm is on its way. He can talk, but has to really try to enunciate his words to strangers and those that are not close to him. Forget about understanding him at night! He becomes exhausted very easily and this is his main issue right now. I believe he has had ALS for 3 years at least.

I would say he has progressed rather slowly compared to some. Just because someone gets diagnosed with ALS doesn't mean they will fit into the 2-5 year life span after onset.

I truly hope you Mom doesn't have ALS and hope the neuro is right! I hope she can be treated!
 

John1

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Feb 25, 2006
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10/2000
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Newfoundland
Hi Andie,

As noted by jimercat, progression rates vary hugely. Her husband is almost certainly a slower than average progressor. This fact seems lost on many neurologists, perhaps because they see relatively few PALS. Steven Hawking has had ALS for decades. Other pass in less than a year after displaying their first symptoms. I'm somewhere in the middle for example. I had my first symptoms in the fall of 1994 and it was the fall of 2000 before being diagnosed. I can't walk anymore but still work, drive and am reasonably intelligible.
 

andie13

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Bethlehem
Thanks so much for the information. I am trying to educate myself as much as I can about what really seems to me is ALS. She has all the signs except the rapid progression. Any advice anyone can provide is so comforting. Thanks again and take care!
 

esrich

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Aug 5, 2007
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PALS
Diagnosis
11/2007
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US
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OK
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Ardmore
My husband's symptoms started late 2003/early 2004 while he was still in Iraq. He has yet to be officially diagnosed. We go to the ALS clinic next week, but the most recent neuro is pretty certain it is ALS. It started in his right arm/hand and he has lost most use of it. He still tries to cut his food with that hand and can still carry light stuff. He falls if he gets in too big a hurry. Has more trouble with stairs now. Easily fatigued. Cramps, fasciculations. Recently has had a couple of throat cramps. That doesn't sound good, but I would say his progression is slow at this point. He still works, drives, etc.
 

andie13

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Loved one DX
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Pennsylvania
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Thanks Shelley for the reply. My Mom stopped working in 2003 after she fell and dislocted her shoulder. She does not have any fasiculations, but seems to have all of the other signs. I am so sorry about your husband's troubles. My Mom lives with me now so I should consider myself her caretaker as well. She runs the show (haha) so it is really hard to say i am her caretaker...yet. I am so afraid of not being strong enough to help her through this...whatever it may be. Take care of yourself and your husband.
Thanks again for the reply. Every reply is so helpful.
Andie
 
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