I see my neurologist a week today and need to ask her about the new parasthesia in my arms, from shoulders through elbows into hands and finger tips. I’ve had nerve conduction studies done in the past which have ruled out nerve compression and I do have Sjögren’s so guessing the fact that it’s bilateral points to progression of my existing SFN. But it isn’t painful - just pins and needles which is unusual for me at this stage. I did have cervical arthritis confirmed a few years ago with C6 root changed - but my GP feels it wouldn’t be bilateral as it is.

Similarly my facial numbness and tingle has been ongoing and assumed to be small fibre neuropathy. But I recently learned that I have a large cavity with a very old root canal sitting right by my trigeminal nerve so maybe it could be causing Trigeminal Neuralgia? But maybe part of my neuro Sjögren’s?

However the most debilitating problem I have been suffering from for ages is that I can’t stand up for long at all without needing to take the weight off my legs and feet urgently. Sometimes I just have to sit on the ground for funny bone type pain. I’ve been assuming that this must be due to lumbar arthritis until I saw my podiatrist recently abs he said he thought neuropathy more likely. Again, this is felt to be affecting my feet and Achilles’ tendons too bilaterally to be due to my severe lumbar wear and tear.

Also I guess it’s a bit too much of a coincidence that the numbness and horrible tingle around my eyes and mouth mirrors the numbness and tingle in my feet and legs?

So I was thinking about the fact that my rheumatologist says in her letter that she was unable to elicit a response from either tendon back in April. Is this a common feature of small fibre neuropathy to have no reflex in Achilles’ tendons and not to be able to bear standing for long? It has got to the stage where I don’t know what to think as my peripheries and face all feel so tingly and numb 24/7. I don’t know where to start with my neurologist as she’s not a good listener. Any help with how to explain all of this as briefly as possible and what to prioritise, would be much appreciated - how to describe it all?