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DesertGypsy

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Joined
Jun 17, 2012
Messages
6
Reason
DX UMND/PLS
Country
US
State
Ca
City
Los Angeles
Hello everybody,

My mom has recently received a preliminary diagnosis of PLS, but it's only been three years, and the neuros say they can't be sure it's not ALS until another year has passed. Mom's trouble began with a tingling in her toes on her left foot, and has progressed to the point where she has little use of her left leg. Her last EMG showed denervation in her other leg as well, and the beginnings of it in her left arm. She went from manually compensating for foot drop, to using a cane, then a walker, and now (reluctantly) a wheelchair. She's seen so many doctors and had so many tests that I've lost count. The first two neuros said it might be ALS, but it was too early to tell and, frankly, they didn't have enough experience to know either way. She's taking baclofen now, but takes far less than she's supposed to because it makes her woozy. She's pretty depressed and angry. It's very overwhelming for all of us to be where we are.

I guess that's a pretty typical introduction around here, isn't it? I hope to find some comfort with others going to rough the same or similar experiences, though it's a lousy way to make friends.

DesertGypsy
 
Welcome to the forums, Gypsy. So sorry about your Mom. You'll find a wealth of info, support and friendship here. Not having a definitive diagnosis can be very frustrating. You'll find others here dealing with similar issues. Check out the PLS section of the forums for some recent discussion.
 
Hi DesertGypsy , welcome to the forum family... your Mom may feel better if she goes on here as well, its a lifeline to us.

Hopefully it will stay as PLS, but look for others who have the PLS stamp... I think AKMom is one, Alyoop had the diagnosis, now they aren't sure... also Zaphoon I think.

Good luck!
 
Hi and welcome to the family, so sorry about your Mom. You and she will find loving, kind people here willing to share their personal knowledge with you. This forum is a lifeline for me. Please ask all the questions you need someone may be able to help; {{{HUGS}}}
 
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