[MAT52]

Hi NT friends. I had my neuro appointment on Wednesday. She started with a disclaimer re the last consultation six months ago and how she hadn't had much info on me at all then. She said now that I have a solid diagnosis of Sjogrens made by a rheumatologist in the same hospital, she can work with me much more easily. She explained that she had a letter from my rheumatologist asking her to decide a) if my neuro symptoms are Sjogrens related and b) if they are significant enough to warrant a big gun drug such as Rituximab or an immunosuppressant.

She did various tests on me again - getting me to walk toe to toe and lift my arms up straight ahead and did reflex tests on my arms and legs. I was absolutely hopeless at the toe to toe walk, struggled to hold arms up in front of me as both shook and left arm is rather weak. I told her about the pins and needles in face and arms and horrible night pain in 4th and 5th knuckles of both hands with locking every night. She feels that Sjogrens causes these symptoms in 20-50% of patients so is happy to call it a clinical SFN me and does not want to do further skin biopsies in order to prove I have small fibre neuropathy. She thinks the limb weakness is probably ganglionopathy. She wasn't of the opinion that inmunesuppressants would not reverse or prevent the neuropathy from progressing.

I tried my utmost to convey my concerns about the numbness and disequilibrium worsening and this time she didn't belittle these symptoms at all - but she pointed out that I'm highly drug allergic so we need to weigh up the risks with the benefits of big gun drugs like Rituximab against their possible effectiveness with this kind of neuropathy. She says that there is no real evidence that drugs such as immunesuppressants prevent peripheral nerve damage. I pointed out that my neuropathic pain was greatly helped by methotrexate and steroids and she shrugged and said that if I choose to go down this route she wouldn't stand in my way and will certainly be talking to my rheumatologist now about what she had observed.

It's not that she's saying my symptoms are mild, although she thinks the ganglionpathy is. But she feels the numbness is a negative symptom i.e. damage has already occurred and won't therefore be helped by drugs now. I explained that I just really don't want it to keep progressing further but she said that the drugs used for RA won't stop it progressing. She was at least taking me seriously this time. However she admitted that she takes a very conservative approach to drugs because those suggested by my rheumy scare her and she doesn't want to encourage me to take such potentially harmful drugs on a false premise. She suggested Pregabalin/Lyrica as the remaining symptom masker she would like me to try, but I said I'd rather not risk side effects of dizziness and mood swings when my worst symptoms are tingle, numbness, weakness in limbs and disequillbrium. After last year with Cymbalta I'm not prepared to take anything more that isn't tackling the disease at source I explained.

So she said she wants more nerve conduction tests done now - which she will organise - prior to advising/writing to the rheumy about me. This is in case it's now affecting my large nerve fibres too. If it is this then she will revise her position on immunesuppressant therapies she explained.

She also said my symptoms have changed in quite a short period of time so it would be very hard to monitor me for any improvements if on Cellcept or Rituximab. I was baffled by this and told her that my symptoms haven't changed - they have progressed! She disagreed - which worried me - and said that the limb weakness and my loss of balance are new. But they really aren't - it is just that I'm still acquiring the vocabulary to describe them accurately.

IViG wasn't mentioned although she asked for my sheet of symptoms and questions when I took this out of my bag - and I did ask about IViG as a possible treatment as my last typed question. I regret not asking her in person now but she was running 30 minutes late and I didn't feel it would have got me any further. So I'm not sure whether this was a successful appointment or not. Awful to hope it's affecting my large nerve fibres now - but this seems to represent my best chance of getting back onto a modifying treatment?