Originally Posted by MAT52

Hello and season's greetings from Scotland. My small fibre neuropathy has continued in much the same instant way - I've had it for about three years and am never free of it but am thankful that it's become less painful over time. Apart from when I have a cold or sick bug when the painful parasthesia in my gums, lips, left nostril and left eye intensifies. I was diagnosed four years ago with RA and am hypothyroid but the RA has gone into spontaneous remission and the Hypothyroidism is apparently well controlled by Levothyroxine.

The only new features of my overall health is microscopic haematuria - which comes with a sensation of needing to pee more often, sensation of pressure and ache on my pelvis and bladder and flanks and ribs and I'm also being treated now for hypertension. Lab tests show no infection and my urine was checked for Bence Jones and was thankfully clear. I have been urgently referred to a urologist and will have a cystoscope in a few weeks time to rule out bladder cancer but I'm fairly sure it will reveal nothing. My problems are too diffuse to b caused by anything localised I think and lumbar puncture a year ago only showed paired oligloclonal bands so not MS despite having so many related symptoms.

The mouth/ nose/ eye parasthesia is not related to any dental problems and I'm not currently under a neurologist because my last one put my issues in the rheumatology camp. All my autoantibodies are negative and inflammatory markers are rising slowly but not soaring again since infections and drug reactions earlier on this year. I see my rheumatologist again in a week's time. He's been very thorough so far but can't find anything specific enough to come up with a diagnosis yet.

The painful parasthesia in my gums and lips is my worst symptom currently and plagues me on a daily basis. I was reading about the facial nerves and recalled that earlier this year an oral surgeon thought that I should have the nerves at the back of my head checked by MRI or CT to rule out neuromas or tumours. I have Morton's neuromas in both my feet which cause a very similar numbness and twitching/ tingling intermittently - most bothersome during the night. And this made me wonder if neuromas can sometimes be part of a systemic process and be multiple - causing a widespread small fibre neuropathy? The neurological symptoms continue to be the most problematic for me. My joints are relatively pain free these days.

I was on steroids for six months and the first thing that went away on the higher dose was the disequilibrium/ balance issue. Each time I tapered off a dose it returned with a vengeance but finally went away once I settled on 7.5mg for a few months and hasn't returned thankfully. Again this could be part of a benign tumour or neuroma in the back of my head I've read.

Has anyone else experienced facial small fibre neuropathy as part of a systemic process? Every health professional I see tells me this must either be psychological or be MS - but I thought this had been ruled out by the paired O bands and brain MRI a year ago had ruled this out?