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christie

New member
Joined
Mar 25, 2015
Messages
7
Reason
PALS
Diagnosis
03/2015
Country
US
State
Alabama
City
Sylacauga
I have just been diagnosed with pbp and I feel like my life is in a whirlwind of change. I have taught for the last 16 years and now I am told, I cannot teach anymore. I am going through a variety of emotions. My family is wonderful and very supportive of me finding out more information. My speech is very slurred, I have a hard time eating and sometimes breathing issues. I don't know what to expect next. My doctor says it can effect people in different ways. I have started taking rilyutrk which he says should prevent it from spreading to my limbs. What do I have ahead of me?
 
Christie, I am so sorry to hear about your diagnosis. My wife was diagnosed with pbp last month. Her symptoms started about seven years ago with slurred speech which progressed to total dysarthria. She also has some problems swallowing and experiencing some hand and foot weakness but is still mobile. It seems to be progressing very slowly. How long have you had your symptoms? I have prayed that her progression is very slow and I will do the same for you. The two expressions tha we use is "one day at a time" and "it is what it is". Maybe we can compare treatments and prognosis and help each other?

David
 
Thank you David
My symptoms were not full blown until Jan of this year-meaning speech problems. It was misdiagnosed at first, but now I am glad I am on the right medication. I am finding it harder to eat solid food and my cheeks feel so heavy. I am beginning to bite on them at night which makes them very sore. Is there any type of "mouth guard" to wear at night to prevent this from happening?
 
A dentist can refer you to someone who makes mouth guards by doing a mold of you your own mouth.

My Chris had one made as he was biting his mouth and grinding his teeth terribly. But he also was already having swallowing issues and saliva issues and he found the mouth guard triggered saliva production immediately and he would feel like he was drowning and have to get it out fast.

Other people find the guards really helpful if they don't have this saliva triggering.
 
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