what's up with my lips?

[Mahealani]

New irritating symptom and I'm wondering if anyone else has had this? My lips feel like they are puckered or like I've been sucking on lemons. They seem to be sensitive to certain foods and once it starts I can't get it to stop. Last night it was salad dressing. I'm just starting slurred speech problems (limb onset 9/0 and so far my swallowing is pretty good. Is this just part of the bulbar progression or am I starting something new to talk about?

MAHEA

[BethU]

Mahea, a number of PALS have experienced similar things. I had a period of about six months where I could not stand the taste or odor of spices. Couldn't eat pizza, and felt I couldn't breathe in the presence of cinnamon, both of which normally I love. It happened very early in my speech problems, before I had any real swallowing issue, and then went away ... apparently for good.

I think moderator Al has experienced this, too, and he has limb onset like you. It seems to be one of those wacky ALS symptoms that are so unlikely you start to think you're nuts.

[Mahealani]

Thanks Beth - everyday is a new journey with this dreadful disease and some times you feel all alone and the doctors aren't really helpful - the forum and the members like you help bring a little peace of mind (until something else comes a long).

Take care.

[Tich1]

Hello Mahealani , this disease certainly teaches you more about itself each day . I seem to learn a new symptom nearly every few days . I too can't hold my mouth closed , and , at times I feel as though the right side of my top lip is curled up , look out Elvis !
xx