Alice and Annie,

Thank you both so much for your replies to this and my other post. I can't tell you how much that means to me, or how much your answers help. I'm going to read through these posts a few times to make sure I take all this advice to heart. Annie, thanks for the suggestions on labs to run and specialists to look into...i hadn't even thought of seeing an endocrinologist or a rheumatologist. I loved your comment about not seeing an auto mechanic to color my hair!...very funny, and very on point. I'll see what I can do about this.

You are both right about finding a neurologist I can trust. I had some really bad luck with my first two. I think my case is more than most docs want to take on, and it shows. In fact, I had three neurologists in the hospital tell me that they wouldn't feel qualified to follow my case. I am glad they are honest, but all of this has left me feeling like I don't have anyone watching out for me, and like I have to handle all of these disorienting details for myself.

There is good news though. I finally connected with Barrows. My referral went through and they booked me an appointment for February 8th! They said the doc is scheduled out until june but because of the severity of my case they were going to double book me for an appointment in February. So that is a relief, and my fingers are crossed that he is willing to engage with my case.

Annie, I know you had some specific questions, and I'll try to go through them tomorrow to fill in the gaps. Thank you so much for helping me. It really means so much.

hugs,

Mandy