I’ve hit a brick wall - a numb one at that!
 

Hi there. I’m looking for advice on where to go with this - if anywhere. My neurologist has made it clear that she is only concerned if my Sjögren’s related SFN - presumed due to difinitive diagnosises of Hypothyroidism and Sjögren’s - progresses to my large nerve fibres/ CNS. She seems to think any reports of progression of what she calls SFN, mild ganglionopathy and ataxia are just me overthinking my heath problems. She calls numbness a “negative symptom” and seems to think this is all relatively benign and uninteresting and I’m making too much of it.

The thing is, as anyone with progressive SFN will understand - it really doesn’t feel benign as she implies to me. The parts of me that are very numb now aren’t even parts she has tested with pin prick. The skin biopsies I had taken 3 years ago were normal. I’ve since relocated and been rediagnosed with Sjögren’s by lip biopsy. My B12 level is very high and my folate is normal. I have plenty of other systemic involvement that appears to be modified by max dose of Cellcept. But for me the SFN and “mild” related ataxia are debilitating. My arms seem to get weaker. She suggests this is all in my mind but it certainly isn’t although my EMG was normal 15 months ago. I think she expects me to just live with this. I do but not very well. I can’t access any targeted physiotherapy unless she acknowledges the impact that this has on my balance, confidence and independence. But she just won’t.

I don’t think there is any purpose in me continuing to see my neuro since she suggests that it’s relatively benign and the only thing she repeatedly offers me are drugs such as Amitriptyline and Gabapentin - which I’ve told her made me ill.

So what I want to ask is whether I should try and get a referral to a different NHS neurologist? In the UK we can only get seen by specialists we are formally referred to or see privately.

Is there any purpose in getting further skin biopsies done and if so should I ask that they be taken from the skin that has completely lost sensation? These are patches of tissue on my elbows, one knee cap and my finger tips and lips and patches on my gums, and around my face and soles. The rest is either tingly and cold or full on pins and needles everywhere - particularly in my arms. With a second neurologist who is totally dismissive and patronising about all of this I’m unsure whether there’s any purpose in being under neurology at all now?