Nerve Conduction studies looking for signs of large nerve fibre involvement?

[MAT51]

I'm going to have more nerve conduction studies on the 24th of this month in a different hospital to where the last ones were done 22 months ago. My neurologist wants to make sure that my Sjogrens related neuro symptoms haven't now progressed to my large nerve fibres. As this will dertermine whether or not I meet the criteria for further immunesuppression or possible IViG, I'm trying to get my head geared up for the possible results. My rheumatology appointment will be a few days after this. If nothing comes from this latest NCS then i will simply be told that I have SFN and it is not treatable.

My symptoms haven't significantly worsened since my last tests, apart from increase in weakness and severe pins and needles in my hands and arms. I'm using splints at night again (I used them for severe wrist and hand pain five years ago) - this time for weakness rather than pain as I find I need these to enable me to move pillows or lift the duvet. My reflexes were tested by the neuro last month and the ones in knees and feet were fine but I had none in my elbows/ arms.

Does this sound significant of larger fibre involvement affecting my arms does anyone know? I can raise my arms still but they feel so tired and I have sharp pain in the sides of both elbows and 4th and 5th knuckles. The weakness now extends up to my shoulders so I'm worried that it maybe progressing. I find myself craving slings to rest them in all the time - but I do make an effort to keep using them so the muscles don't deteriorate unduly.

[SjoGirl]

I am traveling a somewhat similar path and have having difficulty finding much helpful information about neuropathy on the Web. My neurologist told me yesterday that my neuropathy, both poly and mono, is mild and his opinion is that it's caused by issues with discs and arthritis in my neck. Frankly he said a lot, but it didn't seem to provide any firm conclusion.

I wish I could be more helpful.

[SjoGirl]

FYI this book which I learned about when I attended an SJS symposium:sjogrens.org/ssfstore/sjogren-s-related-books/peripheral-neuropathy-when-the-numbness-weakness-and-pain-won-t-stop-detail. I plan to order this week.

[MAT51]

Thanks SjoGirl that looks a really interesting read. I'm fed up with wondering how much of mine is neurological and how much is related to arthritis. My neuro says the opposite to yours and believes the SFN is too diffuse to be related to arthritis. I think she's probably right because I don't have much pain in my back or neck usually.

The Osteoarthritis in my lumbar region must be quite bad because the MRI report said significant wear and tear and the doctor couldn't get the syringe into my spinal cord for lumbar puncture last year because of the fused lumbar discs - it took 8 attempts!

I did have 2/3 very large babies both delivered back to front so it's hardly surprising my hips and lower back are a bit knackered! But this wouldn't account for the autonomic issues or the high sed rate etc so I think my neuro must be right to say that my issues are neuro SjS related rather than due to musculoskeletal wear and tear. I hope we both can learn more and find a treatment to slow this down at last!