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tabney

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Joined
Jan 15, 2007
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53
Reason
PALS
Country
US
State
ky
City
Shelbyville
I have been diagnosed with PLS. The good news is I do not have ALS. At least my neurologist is 85 percent sure it is not ALS. An EMG in three months will give a final diagnosed. I have been looking for a support group all over and never noticed it right under my nose.

I don't know what to say right now. I have limitations to deal with daily. So weak in the legs that standing up is difficult. Once I am on my feet, I have to be careful to walk slowly. My legs cramp alot. Baclofen is not helping yet but I have not been taking it for long. My hands are weak and don't want to do what I need. They are stiff and have
some atrophy. I have no clue what to do now. I have a diagnosed but not much information on
what comes next. Any ideas?:?
 

CindyM

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Joined
Sep 17, 2006
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Reason
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Country
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Hi Tabney. Sorry to hear you've been given a DX. You landed in the right spot on the internet, though. I see quite a few posts about PLS. Try a search on the subject and see if that doesn't hook you up with others who also have this DX. Meanwhile, glad you found us and welcome! Cindy
 

Al

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Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Tabney. Welcome to the forum. I take Baclofen and 300 mg of Quinine and that combination stops the cramping. If you are in the US there is a kerfluffle going on now on whether Quinine contributes to heart disease so you'd have to weigh the risks and talk to your Doc.
AL.
 

CindyM

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Al: kerfluffle? That's a new one on me. I kind of like it! Cindy
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Cindy. Maybe my age is showing or maybe it's just a Canadian expression. It's similar to much ado about nothing or tempest in a teapot or just a big deal about nothing.
AL.
 

CindyM

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I figured it was a regional expression...like we say something is "Wicked Good" or my son-in-law says "I bought new shoeses and a new pair of pantses." The one that drives his wife nuts is "Come here once, will you please." To which she always responds, " Why ask me to come once? Did you think I would come come to you and then go away in order to come back again?"

Our expression for kerfluffle is Don't make a high mass out of a 'Hail Mary.' But I like yours better. :)

Have a good day with your new wheels. I am off to the clinic for another EMG, so I'm kind of on pins and needles this morning, if you catch my drift. ;-)
 
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