Saw an endocrinologist today. I explained my neuro symptoms - which he seemed familiar with because of patients with diabetes. He studied my thyroid results and wants to try me a combination of T3 and T4 - already been taking the latter for 12 years at varying doses. He was very nice and agreed that it's pretty strange that neither my old neuro nor my rheumatologist has given any explanation of fluctuating ESR, CRP or PV or explained high total protein or paired oligloconal bands - apart from nonspecific inflammatory process. He said if a doctor can't provide answers and won't refer me on then I must just leave them behind and keep looking for better doctors. He's retired from NHS but I found him terribly nice and helpful to talk to. He agreed some type of immune mediated neuropathy seemed the most likely thing and warned me that many doctors get really stumped by patients with very rare diseases so may try and fob my symptoms off as all of the mind. Don't let them!

He did think the dizziness and spacious disorientation (I use a cane all the time now) are probably related to proprioception problems from having numbness in my feet. But they aren't totally numb - I can still feel my finger rubbing up and down them for instance. And recently I've been feeling dizzy and spaced out even when seated. Oh well - I see the neurologist on 30th - hope she's as helpful as this endocrine doctor was today.