Has many of you have been referred to neurology?

[pineapple_head]

I have recently been referred to neurology because I have pins and needles in my hands and feet. I also have a nerve pinched in my neck and a numb toe. So I'm just wondering if any of you have had to see a neurologist?

[Hidden]

No I haven't but I did have a few weeks of pins and needles and my rheumatologist said this was probably a sign that RA was still too active so I was switched to injectable MTX - by which time it had gone away. I didn't have the pinched nerve or numb toe though. Good luck xx

[allanah]

saw a neuro surgeon as i had pins and needles in my hands and arms, had an mri scan that said i had 3 prolapsed discs that had fallen onto nerves. I had the op and December and never looked back, you can hardly see the scar.

Try not to worry too much, i was a bag of nerves but at the end of the day when i look back i worried about do i need the op , will i be ok, will it be worth it and for me the answer has been yes.

Dont know what the cause of your problems will be but hope the appointment goes well xx

good luck, let me know what they say xx

[kstinson3 in reply to allanah]

Amen to Allanah's success. I had the op in 2009 and it changed my life.

[pineapple_head]

Thank you very much for your comments. I found interesting that RA could give pins and needles though!!

[Hidden in reply to pineapple_head]

It's inflammation pressing on the nerves that does it I think. My RA has always affected my soft tissue as much as the joints so I guess this was just another weird symptom in my case but I did worry about it terribly at the time and only learned that it was my RA when my ESR came back very high again. But I wouldn't assume it's RA - let your doctors work it out and decide because there are lots of things that can cause pins and needles I learned. Tilda x

[Hidden]

Hello before I was diagnosed two plus years ago I had a referral, I had a few disc bulges sitting on nerves but they thought it would be hazardous for surgery can't remember why but that was causing my pins and needles.

[earthwitch]

Yes, and not just for paraesthesias. I also have a neurogenic bladder (problems with nerve control of bladder muscle) from longstanding spondyloarthritis.

If its looking like its something pinching in your neck, then ask why you aren't being referred to a neurosurgeon - neurologists are more for CNS stuff - brain and stuff going on within the spinal cord whereas neurosurgeons or specialist spinal surgeons understand the mechanics of bone impinging on nerves. It doesn't mean that neurosurgeons automatically want to operate, but for this kind of thing I think they will give a better assessment of what is going on. If you do get an operation suggested, be very careful to get a full statement of exactly what the risks are - for things like necks, it can be really quite high risk of paralysis or other severe consequences, though as always, sometimes the risks are worth taking. Inflammation can also cause pressure on nerves, and scarring from longstanding inflammation can do the same.

Also, some interesting stats I heard - that neurologists have the worst diagnosis rate of any specialists with as many as about a third of people being seen by them discharged with a "functional" diagnosis. I've personally been on the wrong end of their diagnoses - being dismissed with "somatization" as the diagnosis when they didn't understand what was going on.

If you do have MRIs suggested, ask about positional MRIs - like the Fonar that does an upright MRI - its far more likely to show up exactly what is happening than if you are nicely stretched out flat on a standard machine. Not many places have these, but its worth asking.

I've now had three NHS neurology assessments, and none of them was at all interested in the underlying causes of my problems, and none was willing to consider that my symptoms were at all important (even the neurogenic bladder), though at least they conclusively ruled out MS. In contrast I have had one neuro assessment outside the UK, and even though they weren't at all sure exactly where in my spine the problem was, at least they recognised I had neuro abnormalities and I was referred to neuro rehab. Pity the referral took too long to come through and I'd returned to the UK by that time.

I still have the tingling fingers, but can relieve it quite a lot by being extremely careful about keeping my neck in a good position, including with exactly the right height pillows at night.

[mms1966]

I have but it's for Still 's disease. I have have electro muscle testing and a muscle biopsy, am waiting for the results. The testing showed there was something wrong and the biopsy to find out what. I won't know what, if anything, is found until next month, the biopsy was in April!

[Hidden]

I saw a neurologist about 6 years ago for pins and needs less. I was recommended to have ulnar nerves in elbows repositioned to help tingling in hands but haven't done it yet because he also diagnosed vasculitis or inflammation in small veins and now that's controlled the pins and needles are less bother.i also have adult stills and am seeing neuro again. Just wondered please what muscle biopsy involved. I have a lot of muscle wasting is it linked to similar. Good luck with appointments

[Dogrose]

I've been referred to a neurologist because they found anomalies on a brain MRI, I don't actually have any neurological symptoms at all so not sure what he will be looking for! xxx

[pineapple_head]

It's interesting reading seeing what you have all gone through. I'm a bit nervous about the appointment mainly because if it's RA doing this, it'll be a waste of time. On the other hand, at least I will be able to go home and stop worry about those pins and needles, and numb toe!!

Thank you for sharing your experience. It's been an eye opener.

[earthwitch in reply to pineapple_head]

I think you are right, in that it could appear to be a bit of a waste of time, but at least it will rule out anything seriously neurological going on (when they have done all the reflex testing etc). You might be lucky in that you get a neurologist who understands rheum. complications, or one who is interested enough to order an MRI to check things out, so stay positive. Also make sure you ask loads of questions like "could inflammation around nerves be causing this", "could it be that nerves are being pinched", "what tests would you need to do to rule out serious problems", etc

[oldtimer]

I was referred to a neurologist by the Rheumy consultant about the pins and needles. Waiting time around 24 months.

in the meantime I saw the GP about the pain and pins and needles, had a MRI scan which confirmed disc protrusions at L5 &S1, saw the orthopaedic surgeon and cancelled the neurologist, as the answer had already been found.

[earthwitch in reply to oldtimer]

yep. I'd agree that an orthopaedic surgeon is probably just as good for things like this, especially if they have an interest in spinal problems.

[pineapple_head]

Bizarrely, it's the orthopaedic surgeon who is referring me to neurology!! He's reasons were that I have pins and needles in several areas.