bulbar symptoms update

[janicebuf]

hi again everyone. if you look at my last post on bulbar symptoms and then read this post maybe you will have some thoughts....

in speaking with my brother tonight, who has some bulbar als symptoms, he was telling me that for about 6 months he's had a tingling or burning sensation in his left shoulder, neck and left cheek. the neuro suggested that the shoulder and neck would be from an area in his spine that would not affect his cheek muscle. i find this very odd. here he can't 'whistle' pronouce his s's and has sensory loss in both cheeks with tingling/burning in the left cheek. any help??? thanks.

[me]

Just wanted you to know I read your question and have no suggestions....sorry, not up to speed enough on that particular topic. Hopefully someone will have some ideas. Melissa

[Al]

Does Elaine or one of the others with bulbar symptoms have any ideas?

[Granny]

I have bulbar ALS, but have never experienced tingling or burning in my shoulder or neck, nor have I lost sensation in my cheeks. I cannot whistle spit or kiss. My lips do not have any strength to pucker. This will probably not be much help, but thought I would let you know that I am reading with interest. I totally agree with Al that a sense of humor is valuable. I was not blessed with a great one, but this disease has taught me to develop mine!
Hang in there and maybe your questions will get answered.

[janicebuf]

Thanks for your thoughts. Yes, he has a wonderful sense of humor, however frightened he is. I think you need it when you lose 14 family members to this devastating disease! If he has it, I am committing myself to helping him find whatever help he can get. Weather it's clinical trials, holistic, anything at this point. I just wish they would find a cure!

[dana]

My dad has some bulbar symptoms but has never had the burning in his neck. He did have some tingling/cramping sensations in his hands periodically. This occured 2-3 times a week. These symptoms don't occur anymore now that he has started taking an antibiotic for lymes though.
Dana