Nerve symptoms but negative tests
 

I'm stuck between a rock and a hard place. Please help.

I started getting pins and needles in my hands in 2014 which has progressed to numbness alongside the tingling. The symptoms start when I'm lying down; night or day. Occasionally (if I've been sitting in the same positiom with relatively little movements) the tingling will start. I have noticed that both my little fingers get numb and cold. I describe it as them feeling disconnected and not part of my body.

As I have rheumatoid arthritis, it was assumed to be carpal tunnel but nerve conduction tests were normal. Just for info; I also have autonomic neuropathy, affecting my GI tract and blood pressure. Not long after the onset, I started getting excruciating neck pain so we turned our focus to that. I had an MRI and the report said I have bulging discs, wear and tear and some nerve impingement. So, I assumed we had the answer and was lucky enough to get an appt with a top neurogsurgeon very quickly. He reviewed the scan, said there is no nerve impingement :confused: but suggested X-Rays to see if I have an instability at c1/c2. I am awaiting these results. He was convinced I have an entrapment neuropathy but the tests (nerve conduction and EMG) are normal. The neuro dr (not sure his title!) who did the tests said my symptoms are classically neck symptoms and to push for repeated imaging.

Obviously I need to see the neurosurgeon again but I'm feeling despondent. Where do I go from here? I'm in the UK but lucky enough to have private health insurance, so I can get another opinion if needed. However, this man is one of the best so I'm inclined to trust him. That said, I cannot cope with the lack of sleep resulting from my nerve symptoms.

Thanks in advance.

I'm not replying to myself, just adding that I was seen by a physiotherapist today who said there are 3 causes of my hand symptoms all of which have been ruled out but couldn't say what he thought was the cause, except that scans are only a snapshot of one day. He said my symptoms would either be caused by vascular changes (normal tests), trapped nerves in wrists or elbows (normal nerve conduction studies) or spinal cord compression (normal spinal cord shown on scan). He gave me some exercises but we are no further along in identifying the cause. Any ideas please?

Starburst I suspect the reason he is doing an x-ray
 

is your RA could possibly be causing some destruction of the synovial joints. If the joints are destroyed, the connection between each vertebra becomes unstable, causing the upper vertebra to slide forward on top of the one below. This slippage is called spondylolisthesis and I have it in my lumbar spine. This sliding can lead to pressure on the nerve roots and the spinal cord and according to what I have read it is most dramatic between the C1 and C2 vertebrae in the cervical spine. I would wait to see what the x-rays show and then go from there.

[QUOTE=Starburst;1203239]I'm stuck between a rock and a hard place. Please help.

I started getting pins and needles in my hands in 2014 which has progressed to numbness alongside the tingling. The symptoms start when I'm lying down; night or day. Occasionally (if I've been sitting in the same positiom with relatively little movements) the tingling will start. I have noticed that both my little fingers get numb and cold. I describe it as them feeling disconnected and not part of my body.

As I have rheumatoid arthritis, it was assumed to be carpal tunnel but nerve conduction tests were normal. Just for info; I also have autonomic neuropathy, affecting my GI tract and blood pressure. Not long after the onset, I started getting excruciating neck pain so we turned our focus to that. I had an MRI and the report said I have bulging discs, wear and tear and some nerve impingement. So, I assumed we had the answer and was lucky enough to get an appt with a top neurogsurgeon very quickly. He reviewed the scan, said there is no nerve impingement :confused: but suggested X-Rays to see if I have an instability at c1/c2. I am awaiting these results. He was convinced I have an entrapment neuropathy but the tests (nerve conduction and EMG) are normal. The neuro dr (not sure his title!) who did the tests said my symptoms are classically neck symptoms and to push for repeated imaging.

Obviously I need to see the neurosurgeon again but I'm feeling despondent. Where do I go from here? I'm in the UK but lucky enough to have private health insurance, so I can get another opinion if needed. However, this man is one of the best so I'm inclined to trust him. That said, I cannot cope with the lack of sleep resulting from my nerve symptoms.

Starburst you probably know this already- but small fibre neuropathy often does not show up in nerve conduction tests or MRIs. Moreover some people with RA and Lupus get small fibre neuropathy because the small nerve fibres can be affected by systemic inflammation and by damage to joints and tendons. None of these necessarily show up in tests either.

Some types of Vasculitus, Scleroderma and Sjogrens can trigger small fibre neuropathy too. As you know Sjogren's is a very common secondary condition to RA and can also cause autonomic and sensory problems too. Furthermore your RA doesn't have to be active for secondary connective tissue symptoms to be problematic. Perhaps you should ask your rheumatologist about Sjogren's and Vasculitis? Mat X