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kylisa

Distinguished member
Joined
Feb 11, 2008
Messages
195
Reason
Lost a loved one
Country
US
State
KY
City
Stanford
My mother began having foot drop last July. She had nerve conduction and MRi's of her spine and brain. Nothing showed except the nerve issue in her foot. Since all of those tests, she has progressively gotten worse. She now has labored speech, unsteady gait that requires a cane. She has had numerous falls. I believe she has some mild breathing issues too. We finally took her to a neurosurgeon, after the neurologist she was seeing didn't think our concerns were that important.
The neurosurgeon had my mother do numerous tests like pushing and pulling, raising and lowering her limbs, etc. After the exam, the surgeon told us that she needed to have the EMG and nerve conduction tests that the neurologist hadn't done.
What he dismissed as not serious, the surgeon picked up on every single thing without our pointing it out to her.
At the end of the visit, she told us the best case senario could be any number of things causing the different symptoms my mother is having. She went on to say the worst case senario would be ALS.
I am glad to have found this forum. I am afraid all of her symptoms are classic of ALS.
I have never had any experience with this disease. I don't know a single person who has any realatives that have suffered with ALS. After reading some of the posts, I have come to realize that my mother's neurologist probably has never treated an actual ALS patient. I don't know what the future will bring, but if she is diagnosed with ALS, I hope I can lean on you guys. :confused:
 
You are always welcome to lean on us! :-D We will be with you at every step of the way. The first thing I would do is ask Mom to get a second (or third) opinion at a recognized ALS clinic. If she does have this disease, I'd get her registered with her local MD chapter, as they will also have loaner closets and other resources for equipment and services she may need.

Also: you will do both of you a big service to learn all you can about ALS. Our search feature at the top of this screen is a good place to begin.

Welcome, and I hope your worst fears do not prove to be true! Cindy
 
Hi kylisa. Welcome but sorry for your mom's condition. Feel free to ask any questions you may have.
AL.
 
update

My mother now has a brace that fits in her shoe. It has really helped her balance and she hasn't had a fall since she started wearing it. She has an EMG scheduled for March 5th. I can't even describe the mix of emotions going through the family right now. I never thought I would want to let my mother go...however, as she appears to be progressing more and more, I am almost to the point of praying for the Lord to take her before her suffering gets really bad. The sadest part of this whole thing so far is her apparent acceptance of her fate.
 
The sadest part of this whole thing so far is her apparent acceptance of her fate.

Acceptance is a double-sided thing. If she is depressed, she will not do as well as our PALS who develop a positive outlook. But doing all she can to "fight" the disease may not be the answer either. Some things are our of her control. Most PALS cope by enjoying their family while they can. At least this is my observation from hanging out around here. :-D
 
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