[MAT52]

Hi All. I’ve been using the peripheral neuropathy forum infrequently for about 4 years now but this is the first time I can recall posting here - probably where I belong I guess! I live in Scotland.

Having been diagnosed with Hashimoto’s about 15 years ago, I was diagnosed 7 years ago with RA. Did the full gamut of disease modifiers, had awful allergic reactions to all except for Cellcept - which I was okay on but my rheumatologist was concerned when I developed tremors/ vibrations. I was rediagnosed with seronegative Sjögren’s a few years ago by lip biopsy, +ANA (nucleolar pattern), elevated inflammatory markers and raised IgA, IgG (not sure what autoimmunity these are most related to?).

I’m now being left untreated and my body wide small fibre neuropathy (SFN) and Trigeminal Neuralgia are both flaring - especially with the cold. My mouth feels really mangled.

After a few years of excruciating burning the rest of me feels numb and I feel the cold weather triggers everything. Most annoying, after neuropathy, are dull nausea, like travel sickness - and constipation which I try hard to keep on top of but often get the balance wrong!

I’m very careful with my diet and topical treatments for the eyes. I get horrid salty goo in my throat, very dry nose with intermittent sores, and an annoying sticky cough which just come and go rather randomly. I use a humidifier but need the heating on as my Raynaud’s gets to me otherwise. Fatigue and disequilibrium are awful.

So I saw a third neurologist a few months ago and she diagnosed my tremors and sensory Ataxia as functional overlay/ FND. I have tried to square this with myself but have failed. If so many newer neuro symptoms are functional then how can my CRP and PV/ sed rate be rising from elevated to high with each pain flare since I was taken off Cellcept in February?

I’ve tried to contact my rheumatologist through her secretary about getting steroid as back up and something called Carbocysteine and Carbamazapine to break up goo and ease the Trigeminal Neuralgia but she’s not returned my call. I feel really stuck just now - sleeping terribly due to coughing and peripheral pain and horribly fatigued with TN during the days. Feet, fingertips and upper part of head are permanently numb.

I’ve had tilt table test and barium swallow so gastropsresis and autonomic neuropathy have been excluded. So I guess I’m saddled with the functional nonsense now even though I think my fatigue relates to very high plasma viscosity and rising CRP (21). And I think the tremors, balance disorder and wonky gait are actually due to severe fatigue of active Sjögren’s.

Anyone else here been landed with this functional overlay diagnosis by a neurologist despite high markers and related pain and fatigue?