Megan,
I remember really worrying about you when you had the shingles - you just seemed to get it SO badly. Now this! Something's definitely not right. Hair loss, nausea, big tongue - something's out of whack.
I know you're on the NSD but what exactly are you eating? Is there any chance that you're missing some critical nutrients? I'm not saying the docs are wrong (although I actually hope they are with the kind of diagnosis you're talking about) but I'm wondering whether a naturopath would look at the whole picture with you. The docs have a tendency to look through blinkers at a narrow slice of you - just your AS or just your neuropathy etc. I've heard of situations where patients became deathly ill because of the treatments for their diseases and the fact no one was paying attention to their whole body's health and whether the various treatments were interacting with each other to cause serious negative effects.
I feel like I want to whisk you over to BC and take care of you - that seems to be one of the missing components. As ill as you are, you need someone to be looking out for you. Some serious nursing you back to health.
Please take it easy, minimize your stress and try to take the best care of yourself possible.
