Tests for peripheral neuropathy?

[ZoeJackdaw]

Has anyone had nerve/muscle tests? I have an appointment for 2 weeks time and I'm absolutely dreading it! Electric shocks and needles!! Sounds like something from a horror movie!

[moyramm]

Hi ZoeJackdaw, I had these tests a few week ago. I was being investigated for facial pain.The test was not that bad. My face pain is constant and it did increase after the tests but it only lasted about 30 mins then it went back to the level I normally have. I was like you because you just imagine it will be bad. Hope your tests go well and it is not too painful for you. Love and hugs x Moyra

[ZoeJackdaw in reply to moyramm]

Thanks Moyra. I'm having the tests for peripheral neuropathy. The face must be much worse! Thanks so much for your reply x

[moyramm in reply to ZoeJackdaw]

It's a pleasure, hope your tests go well and you get some answers to what is wrong. I am still very much in the dark as to what is causing my pain. The doctors just can't make up their mind.I had an appointment at the local pain clinic the other day, but that didn't go well, so I am just hoping that the penny will drop one of these days and I will get a result x Moyra

[ZoeJackdaw in reply to moyramm]

Wishing the best of luck x

[PMRpro]

It really isn't as bad as that! I've had them done when I was a student and while you can feel it it isn't usually painful. I have had an electric shock by accident - and it was noticeable but not horrendous!

foundationforpn.org/what-is...

The needles aren't any worse than having your shots or blood taken. The electric "shocks" are more like the ones you get from a TENS machine for pain relief.

[ZoeJackdaw in reply to PMRpro]

Thanks! That's reassuring!

[LottieD]

I had these tests for the same thing. Sent by my neurologist. All went fine not to painful. They told me at the end of tests that all was normal. I burst in to tears I know that sounds stupid but you just want to know what is wrong. I did my own research and found out that it can also be small fibre peripheral neuropathy. Neurologist said what have you been reading, but sent me anyway. I tested positive and the doctor told me there and then. I asked if it can affect my face because of pain, pins and needles and numbness. He said yes but rare. The machine which tested for this was out of order that day. Since then I have also been diagnosed with fibromyalgia, reluctantly by a rheumy that I would not send my worst enemy to !! The trek goes on. I have just had a lip biopsy, not pleasant, second rheumy looking for Sjorgrens. I know I think that there is no miracle cure and now am trying to adjust to the new me. I wish you luck with your next step of your journey. Please don't worry the test is not as bad as it seems. All the staff that dealt with me were lovely 😊 xx

[ZoeJackdaw in reply to LottieD]

Thanks LottieD. My symptoms include unbearably intense itching in my limbs and numbness in my feet and lower legs. Good luck going forward. Let's hope we find the answers we need x

[Galaxy2]

Hi There

Really don't worry these tests aren't anything as bad as they sound, I've had them a couple of times. The electric shocks feel like tickles running down your arms/legs with a little jolt.

It's the unknown I find that's causes worry I know but the staff are always lovely when I go for tests and this one is all over in about 20 mins.

Good luck and I hope you get some answers.

Jenny

[ZoeJackdaw in reply to Galaxy2]

Thank you Jenny. These reassuring words help a lot! X

[Melba1]

Hi, I don't think they hurt very much at all. Two of my sons had the tests, one when he was 10 and not brave with things like that at all (he cried at injections!) and he said it didn't hurt, just felt weird and tingly. The other one had a high jump injury and had no feeling in his leg so couldn't feel the needles! The problem with these tests is that I think they mainly test axon damage and as the previous poster said not the small fibre type that seems more common in lupus so you may not get answers. Is yours constantly numb (no feeling) or pins and needles and does it come and go in different places or stay in the same place? From having seen a neurologist this week myself for regular pins and needles in hands/feet and face, the type of pins and needles that changes location and isn't constant is harder to confirm. Also with my sons the one who had damaged one spinal nerve root had a very clear and easily testable lack of conduction of the shocks in these tests and his loss of sensation is complete (can't feel any pain, temperature change etc on that leg) - although the hospital spent 3 days telling us he'd broken his leg - and sent him for multiple leg x rays even though he had landed on his back and had no leg injury at all so these tests were great in his case at identifying which nerve was damaged. However my other son who had the tests when he was recovering from an acute autoimmune neurological disease (guillain barre) had completely negative results even though he was still quite paralysed (in a wheelchair and no feeling in pelvis meaning he was completely incontinent until the nerves regrew). The consultant explained that was because he'd partially lost the myelin rather than the axons - I think! I really hope you get some answers but do be prepared that you may come out none the wiser. From reading a lot of personal cases and medical research it seems that a lot of us with lupus suffer with these neurological symptoms but no one really knows why or has developed testing that confirms it. Like Lottie said, adjusting to the new us with our weird bodies is probably the biggest battle (and making neurologists believe that we aren't just imaging it!!) x

[ZoeJackdaw in reply to Melba1]

Thanks so much for your response. I'll let you know how it goes. Fingers crossed!