Having fallen on toilet bowl and fractured my lower rib(s) a week ago, I’m feeling so zapped out by Diazepam and Nefopam combination with Lidocaine patches, unable to eat anything without forcing it down me, I’m depending on my husband’s account rather than my own recollection because it’s a bit of a blur. The stabbing pain spasms on moving are extreme.

But I wanted to update on neurology appointment for second opinion yesterday, having been treated badly by this doctor’s senior colleague last year over my Sjögren’s related SFN and tremors. I saw a skinny youngish woman and my husband I both immediately took to her.

After an hour long consultation, with thorough checks, history, explanation that her main interest is neuro inflammation and related sensory polyneuropathy - I feel like I might have hit the jack pot at long last. However i was out of it on the Diazepam and Nefopam and lack of sleep. She said immediately that she’s seen my recent A&E/ ER discharge notes and they have described rib fracture and very severe bruising so she realised I’d be on strong pain meds and this would likely influence the results of some tests so she wants to see me again in two months.

The gist of all her tests was that my tremors and sensory ataxia, hyperacusis and some cognitive issues my husband described as inability to concentrate - were largely functional as a direct result of my Sjogrens related fatigue. At one point she asked me what I hoped to get from this consultation and my husband wondered if this was a bit of a trick question. I did falter but returned that I just want plausible explanations so I can believe in myself and my doctors. I don’t like non evidence based theories about what’s going on or the feeling that no one is taking any notice of my symptoms due to lack of clear clinical evidence. I told her I would like previously negative skin biopsies to be repeated but she didn’t reply.

She said that I have confirmed Sjögren’s and many with this disease have some neuropathy to a great or lesser extent, small fibre neuropathy being the most common type. She said that it is thought that this Sjögren’s related SFN is probably a form of small vessel Vasculitis underlying so is more active when the systemic Sjögren’s is active. She explained that by functional she means that they can usually work with it through non drug intervention. There is no disputing my SFN relates to my autoimmunity but it’s the severe fatigue that causes neurons to over or under react to stimuli that most people can process. I was clearly wary and explained that my first neurologist had given me plausible explanation about left sided functional haemaparesis, but that as soon as GPs and other specialists see “functional” they assume hypochondria so I really dislike this term now. Particularly as, with me, these are so often drug allergy reactions eg stroke like impact on me of Tramadol. She said she understood this but that she is saying that fatigue is a very real aspect of autoimmune diseases and calling it functional just means there is no clear mechanical process such as large nerve fibre or CNS reason for symptoms such as motor deficit.

So I asked if she was going to discharge me due to the supposedly “functional”/ fatigue related sensory issues I’m facing. She said no - on the contrary she feels that I have an established systemic disease that causes severe fatigue and neuropathy plus autonomic dysfunction - which is causing me very real distress and poor functionality. She also confirmed that my tremors are part of this as my body responds to perceived signals inappropriately because of constant sensory overload and bad neuro signal habits then form. She calls this something “overloading” which my neuro physio also said. She wants to work with my neuro physio to help retrain my proprioception. But she added that small fibre neuropathy everywhere is at least partly due to inflammation related fatigue and so we have to be realistic about this. My sensory overload is a natural response of neurons addled by longstanding lack of quality sleep and Sjögren’s dryness and possible central sleep apnea relating to autonomic issues.

I told her about Mycophenolate/ Cellcept and my rheumy’s concerns that it could have triggered new or worsening neuro symptoms and she said that she is sure this is not the case with me. She said that Mycophenolate is used to good effect with other forms of inflammatory neuropathy so, unlike the last neuro, she’s not against such immune-suppression for me at all. She hopes to get to my rheumatologist before their multidisciplinary team meeting to discuss possible treatment options for me. She will therefore will go and see my rheumy in person and explain what she has found so far, bearing in mind that I have rib fracture and related contusion and meds that will be skewing things today.

By each symptom described on my list she wrote “fatigue” and is adamant that this is the cause of about 50% of my neuro symptoms but the rest is likely due to SFN and degenerative disc disease combined. She says that the vascular doctor had expedited this appointment and would also apparently like me to see a neurosurgeon to discuss whether surgical intervention is warranted or not. She personally feels at this stage that it isn’t and the NHS would be unlikely to support any operations at this stage - but understands that it’s worth considering and discussing at least - although she would be concerned if she thought I had expectations that it would alleviate most of my symptoms. At best it might just take the edge off.

She did observe, from testing, that all is worse on my left side and thinks this is partly due to the degenerative disc disease but also is an interesting feature of what is going on in my brain itself. She said that I can do things such as push against her and grip but it takes time for me to manage to galvanise my limbs distally - particularly on my left side. Finally she and my GP both agree that it’s good that my rheum has already referred me to cardiology for tilt table testing and for EMG of my face for Trigeminal Neuralgia - but it’s important that i’m not overly dismayed or feel self doubt if nothing shows up, as so often happens. She clearly thinks very highly of my ENT consultant and balance expert and believes that a good multidisciplinary approach is the way forward for me and for them too. Her senior colleague wasn’t spoken about by either of us and husband said I was very magnanimous not to stick the boot in at any point about her. But I think I was just being political because she did describe them all (neurology) as a “closeknit team” at one stage.

So I guess it’s a resounding whistle of relief from me at last at being listened to and treated respectfully - despite feeling mind blowingly numb, nauseous and dizzy just now. Meanwhile the Nefopam appears to be working unexpectedly well on the rib pain but I’m so tired, numb and dizzy all the time on it with high dose Diazepam. I have a bruise the size of a football etched on my side with a large hematoma under it plus plenty of swelling. Interesting to observe how a visible injury elicits sympathy and action from doctors, friends and family and yet it will likely be over in six weeks. Give me this acute pain over my SFN any day!