On 22nd November I had an expedited appointment with the neurologist I’ve been seeing since relocating to another part of Scotland. She was friendly but dismissed me very quickly after she found my tendon reflexes to be “brisk”. She said she would review CT and brain imaging relating to small vessel disease and arthritis and get back to me ASAP.

I heard nothing for 2 months but then obtained a copy of her letter to my GP saying that, due to no problems relating to imaging or with my reflexes on exam. She conceded responses corresponding with my described symptoms with mild ankle to heel ataxia - however she felt concerned that “there is a bit of heightened health awareness going on here”.

This completely threw me into a state of self doubt nearing crisis/ medical PTSD - not feeling believed is just the most distressing thing for me.

So when this fine tremor, that was once in only one toe four years ago, started up in my sole of same foot before I’d received her letter I felt a little freaked out. Then her letter, then a really nasty cold virus. Now fine the tremor it’s everywhere 24/7 and I feel like a nervous breakdown is impending. I go to sleep but usually wake in a state of high alert at 3 or 4am.

When I get out of bed before my adrenalin has kicked in, I am too dizzy to stand up. The few times I’ve taken BP readings in the early hours I get readings of 76/45. I’m on BP meds for hypertension which have been reduced because my BP averages low end normal (goes very high often too). I’ve been tested for sleep apnea using an overnight kit but this was normal.

I have Hashimoto’s and Sjogren’s, possibly have MCAD and Ehlers Danlos Syndrome - undiagnosed as yet and not diagnoses I want to pursue as it would cost me so much and not get me any further. My rheumatologist has just taken me off Cellcept which I tried for 14 months because she feels, beyond SFN - there is no CNS or organ involvement with my Sjögren’s. I am left feeling terribly anxious - like I’m going nuts. I am also being treated for post viral asthma after a foul cold in January. But the tremors started before this and I’m starting to wonder if I have some sort of anxiety disorder to be honest?

My mouth is always painful with SFN, the rest of me is numb or tingly or both. My left eye feels like it’s starting to droop or turn fully numb. I feel as if I’ve had local anaesthetic everywhere and my body quivers and shakes. Can this be just be SFN as neuro says? I can’t understand how this can feel so severe and debilitating and yet the neurologist says it’s just SFN?

Can anyone advise on what I coukd do to next to try and ease my tremors. I feel I’m so wired or crashed all the time that i fear I’ll give myself a heart attack or stroke soon. I try mindfulness, have a good life apart from the awful Sjögren’s and impact on my mobility of all this stuff. Why do my doctors keep telling me it’s just Small Fibre neuropathy as if it’s nothing much?