Hello. I've not been around here at all for a while. This is for positive reasons I think. An endocrinologist suggested I add Lirothyronine (T3) to existing my Levothyroxine (T4). I also added methyl B12 tablets to my daily cocktail despite having healthy serum B12 blood result of 628. I worked out that my severe constipation and weird spotty stools were probably the result of a dairy intolerance caused by drinking untreated water for six months in the cottage where we stayed over the winter.

And on this mix of meds plus going dairy free my overall health has improved significantly.

I saw a neurologist at the end of March, just before starting the T3, and she was somewhat dismissive - saying I looked "too well" to have a multisystem autoimmune disease although she acknowledged my clinically diagnosed small fibre neuropathy, my paired oligloclonal bands and mentioned possible ganglionopathy. I took all this on the chin because I have felt a lot better since adding in the mix above. She wasn't very helpful about the disequillibrium I reported - which comes and goes in severity. She mentioned this being due proprioception issues but was very focussed on how great it is that my RA has gone into remission despite my being off all drugs. She said yes I have some permanent numbness in feet and hands and mouth but I think what she was trying to tell me was that this has been caused in the past by active RA which has killed off some small nerves irreparably. But fortunately this is not progressing she says.

This is something I can take on board to an extent because until a few days ago the only pain I was having was the burning pain in my gums and lips and up into my nostrils. And even this had subsided a lot until today. But what about the fact that I always start to sway to one side if I close my eyes, I find patterned carpets very disturbing and I regularly get disorientated and lose my bearings - especially in enclosed spaces such as public toilets? Also I am finding the gripping nerve pain is once again flaring again in my feet, ankles and shins, hands, wrists and mouth. It's not epic again but it's waking me in the early hours again despite antihistamine. The phantom gum pain is most unpleasant, as is the salty/ sour taste and the peripheral pain is causing my jaw to lock and teeth to grind more again.

So can anyone tell me what they understand by this paragraph from the neurologist's letter. I don't understand how a positive Romberg's test and this clumsiness isn't significant? After this she says she wants to know what her rheumatology colleagues have to say. I'm not going to hold my breath!

"I am not convinced about the swaying to the right and clumsiness on knee heel testing in view of the absence of cerebellar signs or clear vestibular disturbances. I think this lady has had extensive investigations and the difficulty is with regards to continuity of care and the ability to objectify any progression of her symptoms"