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Tongue I have PBP and my tongue is now almost dead. It started with quivering which changed to non movement. Limbs still ok. Merle(kiwi):-D

Hi again, I am down to have a PEG 10th October. At first only for a supplement. What do you put down? Ensure was mentioned. What about Fortisap? Can the evening mealbe blended to put down? Excuse my ignorance please. Regards Merle (Kiwi with PBP):-D

Hey my tongue is almost dead, except I feel it when I bite it! I use my finger to move food onto teeth to chew. Pills sit at back of throat and I almost gag just before it goes down. Sometimes it comes up for round 2! I have PBP. cheers Merle (Kiwi from New Zealand) :-D

Hi everyone, I am still trying to get round operating in this forum but everything takes time! I have PBP. I started losing my speech and was treated for a stroke. July 04. Passed all test with flying colours. March 05 by process of elimination I have PBP. Speech now is barely understandable. I...

Hi, I have been on Rilutek for nearly a year and started shortly after diagnosis. I can just hope that I am better than I might have been without it. Have to live with hope! Its very expensive here but I am telling myself it is worth it. I want to live for a long time! I have regular blood tests...

Hi there, I have PBP and it was a process of elimination. MRI, muscle test, breathing tests, blood tests all normal. Started with poor speech after dental visit. Bit by bit I was unable to say some words. Now can still eat softish food, meat and veges cut up. Can't eat salad, biscuits and cakes...

I'm new to this site and come from way down under (New Zealand). I have PBP and lined up for a PEG. Apart from that I am fine. We have just returned from China where I walked on the Great wall and Florida where I became a child at the marvellous theme parks. I'm living it up while I can! 'One...

Hi, I have PBP. My first signs were after 2 visits to dentist for root canal. I don't know what injections were but months later in 2 re visits he never charged me! Guilty Concious? I also had a screaming argument with husband and I cried so much I couldn't talk. Afterwards speech was worse!