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melindar

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Joined
Aug 30, 2006
Messages
3
Reason
PALS
Country
US
State
pa
City
pittsburgh
i POSTED THIS ON ANOTHER BOARD BUT DIDN'T GET A RESPONSE. MY DAD HAS HAD TONGUE FASCICULATIONS FOR ABOUT HALF A YEAR. HE HAS HAD A FULL EMG INCLUDING THE TONGUE BUT HE CONTINUES TO WORRY. I HAVE READ THAT SOME OF YOU HAVE HAD CLEAN EMGS AND THEN WERE DIAGNOSED WITH ALS. CAN ANYONE TELL ME THEIR INITIAL SYMPTOMES AND HOW THEY WERE DIAGNOSED WITH BULBAR ALS. THIS WILL REALLY HELP ME DAD AS HE IS VERY CONCERNED.
THANK YOU,
MELINDA
PITTSBURGH PA
 

reacree

Member
Joined
Sep 4, 2006
Messages
16
Reason
PALS
Diagnosis
01/2006
Country
US
State
Florida
City
Pensacola
symptomes

Hi Melinda,
I am in the process of being diganosed, and my neuro. tells me he is pretty sure it is bulbar ALS, but he hasn't ruled out PLS.
My first sym. that I remember was I couldn't speak correctly when I was excited or mad.
I also lost the ability to whistle, and spit. I couldn't blow a candle out from any great distance.
This has progressed to the point that now I have difficulty speaking at all times. I have to speak in a mono tone, and some words I can't say at all. My tounge has become somewhat stiffer and slower. My lips don't close tightly, and sometimes liquid is expelled
back out through them when I swallow. My cheeks are also stiff. I have to clench my teeth together when I sneeze to keep from biting my tounge.
I have trouble swallowing, mostly liquids, and I never mix solids and liquids in my mouth.
I find it helps to keep the head tilted forward and use a straw to drink liquids.
I noticed my first sym. about the spring of 2004. My EMG's are still pretty good and I don't seem to have any weakness in my limbs, althogh I have taken a couple of falls lately. My feet don't seem to move fast enough to keep my balance if I get in position
where I need to move fast.
I guess you would say I was diagnosed with bulbar , by the fact that only my throat
and to some extent my breathing mussles are affected at this point.
I hope this helps
reacree
 

southern lady

Member
Joined
Apr 24, 2006
Messages
28
Reason
PALS
Country
US
State
AL
City
Jackson
Bulbar ALS

I was having slurred speech; went to nuerologist who did emg & one week later, I got the diagnosis. My tongue quivered like a bowl of jello. If I sneezed suddenly, would bite right through it. (diagnosed Mar 05). We went to Denver for 2nd opinion, but he didn't even run tests, just concurred with diagnosis. We walked out determined to make best of time we had. Explored Boulder while we were out there. Took granddaughters & daughter to Peabody in Memphis & ride on river boat, week at beach, flew to Oregon to see end of Lewis & clark Trail (loved Astoria), saw the Columbian River Gorge, went to Canadian Rockies (Banff, Jasper, Lake Louise) & in oct. made trip to Yellowstone. It snowed & we saw 100's of geysers & buffalo. In the mean time ALS made it increasingly difficult for me to talk, hard to swallow liquids withour thickener & at times the fasciculations almost drove me crazy. Today, I can still type (left arm weaker than right), I still walk but it is not a pretty sight, & I will use wheel chair. Can't talk. Let myself be tube fed. Sleep with Bi-pap to preserve lung function. Can still potty with built up seat & arms to pull up on. 18 months past diagnosed, life still worth living. Do not give up!
 
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