Neurology appointment update

[MAT51]

Hi Sjogrens 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 could 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.

She explained that numbness is damage that has already occurred and won't therefore be helped by drugs now. I said I just really don't want it to keep progressing further and she said that the drugs used for RA won't stop it progressing. She then 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 drug 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 couldn't say when she'd see me again until she knew when my nerve conduction test will be. She also says that there is no way for her to measure/ assess my small fibre neuropathy without punching bits out of me continually which she won't do, or diagnose ganglionopathy. So she will be relying entirely on my descriptions of symptoms progressing to make her decisions.

Finally she 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 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?

[irish]

It seems that you had a pretty successful appointment. We don't always have apt where we agree completely with what our doctor tells us. It is really hard to explain some of issues to doctors and I know that there are times that I just can't find the right words to get my point across.

You seemed to get some good info out of the doctor and make some headway in talking about treatment. Chances are that if you continue to see her you will get treatment of some sort. You may not get IVIG right away, but I'm betting that when she talks with your rheumatologist the subject of IVIG will come up. Just hang in there cause you have made the start of a relationship that with patience should continue. Good luck. Irish

[MAT51]

Thanks so much for putting a positive light on this appointment for me Irish. I suppose my worry is that IViG needs introducing soon enough to prevent further nerve damage in time. Time feels of the essence here. But then I've had these symptoms going on for six or seven years now, gradually worsening. And I'm still alive and functioning as she can see for herself. And during the day times I'm not in too much pain as I was. It's just the night pain that seems to be returning quite forcefully  and I think this might be an inflammatory arthritis matter more than a neuropathic one. Anyway I'm glad, as you say, that things went much better with her this time. It's good to lay the foundations of a  working relationship down I agree. Best wishes, Mat

[katie1111]

One big positive here - she listened.   She agreed something physical was going on and didn't tell you to get counseling.  She may not agree with you on medications, but she isn't brushing off your symptoms.

Katie

[warmwaters]

Another point - your rheumy can prescribe all of the treatments you mentioned.  So even the neurologist files a report with just a series of "what's wrong" items, it may be sufficient for rheumy to act.   Doctors disagree on course of treatment all the time.

[MAT51]

One big positive here - she listened.   She agreed something physical was going on and didn't tell you to get counseling.  She may not agree with you on medications, but she isn't brushing off your symptoms.

Katie

No I agree that is a big positive Katie. The trouble is that I was so relieved at being taken seriously now, that I accepted everything she said lying down!

[MAT51]

Another point - your rheumy can prescribe all of the treatments you mentioned.  So even the neurologist files a report with just a series of "what's wrong" items, it may be sufficient for rheumy to act.   Doctors disagree on course of treatment all the time.

True enough. But my rheumy actually asked her to advise him on whether or not my SS warranted further medication - so he has made her a key contributor. I strongly suspect they will sing from the same song sheet whatever the outcome of my follow up nerve conduction tests.