I'm sorry that you have to deal with all of this Sally - that sounds nasty!

As you know, I don't have MS but my nanan had Progressive MS. She used to get some of the symptoms you are describing and all of the doctors were baffled by them and didn't know what they were so in the end, they said that they were just "extreme pressure-sores". We never really got an answer to whether they definitely were pressure sores or not but I think that because the doctors hadn't seen them before, they just put it down to being them!!

My nanan had some pretty bad ones on her tongue, my mum said they used to look like lesions and it made eating really hard for her because her tongue would hurt a lot.

I hope you get some answers soon and i'm sorry that I can't help you that much - just wanted to let you know that my nanan had similar problems too though!