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Pegaret

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Joined
Mar 13, 2016
Messages
1
Reason
DX UMND/PLS
Diagnosis
11/2015
Country
US
State
California
City
San Juan Bautista
In November of last year my neurologist has given me the tentative diagnosis of PLS.

My symptoms began in June of 2015 my not being able to pronounce words very well. My speaking was fine, every now and then a word would come out funny sounding. It only happened every now and then and wasn't continuous.

Over time, my speech began to get slower and more words were beginning to slur. I can't pronounce "cold" anymore - it comes out "code".

Now, as of about a month ago, I can barely speak - it takes a lot of effort to talk. I do have problems drinking liquids at times - I will choke on them as they go down the wrong pipe.

My other symptoms are that the right side of my mouth doesn't work anymore. That has been since August. I have feeling on the skin, but it doesn't smile. My tongue doesn't move very well to the right. I have to use my finger to clear food out of my gums.

The numbness on my lips kind of moves around - the lower right side of my tongue is very numb and sometimes my upper lip is numb as well. Actually, it was happening on and off and now my upper lip is numb all the time. But the moving around numbness was strange.
There are days when the right side of my tongue is super numb - doesn't happen all the time - it is off and on.

My neurologist has a patient with the same symptoms as I have - she has had them for 2 years with no changes to the rest of her body.

I just wanted to ask anyone if they have had the same symptoms as myself?

I don't have any fasciculations - no twinging at all. Just the mouth that doesn't work on the right side and my tongue
 
As with all MND, we recommend a 2nd opinion. The mobile/intermittent paresis is a little out there for PLS. UCSF may be the closest MND center to you. Your neuro can refer you. There are several other possibilities so keep an open mind.

Best,
Laurie
 
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