Hello and season's greetings from Scotland.

My small fibre neuropathy has continued in much the same insistent 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 be 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?

I will repeat this again.... ACE inhibitor drugs used for hypertension increase bradykinin in the tissues, and this causes all sorts of problems. If you ask to have your blood pressure drug changed to a completely different family of drugs, you may find some relief. This happened to me with lisinopril.

https://en.wikipedia.org/wiki/Bradykinin

MrsD, I'm curious what you think of Atacand, if you have a second.

There is a paper showing a reduced rate of ACE side effects, with Atacand (which is an ARB, ACE receptor blocker).

http://www.ncbi.nlm.nih.gov/pubmed/12222554

So people who react strongly to elevated bradykinin need to be vigilant if this drug is used after a reaction to ACE inhibitors.

This article is interesting too:
http://www.jneurosci.org/content/25/35/7986.full

The ACE drugs are derived from snake venom. They have a wide range of effects on tissue. Mostly swelling, fluid retention, and lowered blood pressure and increased pain due to NMDA receptor activity.

This link shows the chemical cascade of elevated bradykinin:
ttps://www.firazyr.com/hcp/about-hereditary-angioedema/bradykinin

I had a dry cough on Ramipril so was switched to ARB called Losartan (aware names might be different in the UK) and I don't think I've had any problems on it although I take on board what you are saying. There is a train of thought that says that BP meds are pointless because real hypertension is relatively rare and getting to the cause is more important. I've read about this recently on Thyroid UK HealthUnlocked.

The thing is that my BP was only borderline high but both my parents dropped dead suddenly from Atherosclerosis relatively young and I'm borderline for this too. Also my optician was surprised to see a flame haemorrhage close to my optic nerve and this usually occurs only with diabetes or hypertension so I felt it would be worth trying to get it under control because having a connective tissue disease increases cardiovascular and stroke risk by 40%.

Also I've been monitored and this is how blood in pee was discovered so it's helped me to keep being investigated for Lupus and Sjogren's despite my negative antibodies for both. I do everything I can fir myself with diet and exercise but still my ESR and CRP are too high so I feel hypertension isn't good. I've never had any drops in BP yet though.

Thank you for this. Basically, I asked because an older friend is on them and has been for months because he is leaking protein. I don't know how long he wants to be on them. The other option, if it gets worse is chemo.

Hi Mat,

Morton's neuroma are not a true neuroma but a swelling of an intertarsal nerve and thickening of the tissue around it. This is usually from a mechanical cause. True neuromas and neuroma-in-continuity are different. Nerve tumors such as schwanomma are different still.

I'm not saying you shouldn't get an MRI but maybe rest easy that your feet are not necessarily an indicator of a systemic problem.

Sadly, I had to learn a lot about these guys after having a true neuroma form after a nerve injury.

Hi Mrs D. I'm certain that these symptoms are nothing to do with my BP meds because they started years before I was put on these. I switched from Ace to Arb inhibitor after six weeks and now am hoping to be switched to Amlopedine so that my Raynauds symptoms are aided as well.

Hi Mat,

Yes, I have body-wide SFN and face and head symptoms along with it, so face and back and top of the head. MS or tumor was suspected in my case as well but a brain MRI along with full spine MRI turned up nothing. You can read more about my story here: http://neurotalk.psychcentral.com/thread229734.html.

I experience tingling and numbness, mostly tingling though, all over my head and face, facial muscle twitches (eye lids, cheeks), and sometimes electrical shock sensations on my right (and perhaps my left - I haven't paid attention) side going from my upper cheek to the tip of my nose.

I hope this helps, and good luck with figuring things out on your end. The cause of mine is still unknown, but Sjogren's is possible along with some other things. The suspicion is autuimmune.

Next to legs and feet, the place I feel the neuropathy the most is in my head...especially the temple region.