Pain with PBP?

[mamaoftwo]

I am as yet undiagnosed but have many of the symptoms that are leading my neuro to consider ALS. However one thing he is consistent on is that there is no real pain associated with PBP or any bulbar ALS symptoms which does not fit with my presentation. I have pain in my throat and my tongue and often neck too ( a deep aching like I permanemently have strep!). Some days are much worse than others. When I breathe it can feel as though the air I breathe is very hot. My voice can be very hoarse and quiet. Uncomfortable. I have diagnosed vagus nerve damage of unknown origin - hypertrophy of nerves in throat, some reflux and unilateral vocal cord weakness. This on top of the usual ones - limb fasics, atrophy, weakness etc.
So my question is this - for any of you with PBP, can you relate to these sensations I am describing?

 

[Cornelia]

My throat and tongue ache constantly, and this is since April/May of 07. All of it has
been attributed to GERD. I feel like I have Tonsilitis, without the tonsils..... various
things have helped, somewhat. No more Listerine, use Sensodyne toothpase (non whitening), sleeping with my head propped up on pillows, also acid reducers such as
prilosec, there are many others.....hope this helps. If you can position your tongue
behind your molars it is a good sign. Hope you find answers soon. Cornelia