Nerve Conduction tests-pocket duties please.

dibdab
dibdab Member Posts: 1,498
edited 9. Oct 2017, 10:33 in Living with Arthritis archive
For a while now I've been having problems with tingling in my feet and legs, they seem to correlate with starting on Leflunomide and peripheral neuropathy is listed as a potential side effect. When I rang the rheumy helpline they seemed unconcerned, but my GP has referred me for Nerve Conduction studies with a neurologist. I'm hoping it's something reversible as I'm getting very little sleep because I can't settle off due to the weird sensations, also it just feels really odd walking with tingly feet, and I'm trying to up my activity levels and lose some weight to help my dodgy knees and ankles ( I've dropped a dress size and the next size down is getting baggy-but I deliberately don't weigh myself because I don't want to get fixated on it and disappointed when I don't lose anything).

I was wondering if anyone might share their experiences so I know what to expect please? Also as hubby can't come and I'll be going to the appointment alone I'd appreciate some pocket dwellers for next Tuesday afternoon if anyone is free!

Deb x
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Comments

  • stickywicket
    stickywicket Member Posts: 26,327
    edited 30. Nov -1, 00:00
    Sorry, I can't help at all, Deb, but count me in for pocket duties. I only took lef briefly and had no such symptoms on it. Good luck.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Thanks SW, I'm hoping I can carry on with Lef because it makes me feel much less groggy and sickly than Methotrexate, and I've had less infections, but if it's causing the peripheral nerve issues I don't think I can carry on with it. I've a rheumy appointment in early October so hopefully the two departments can tie up and suggest a way forward.

    Deb
  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Hello Deb,

    You can count us in for next Tuesday afternoon's pocket duties.

    I hope the results help and you are able remain on your preferred medication.

    Best wishes

    Ellen
  • palo
    palo Member Posts: 239
    edited 30. Nov -1, 00:00
    Hi Deb,

    I have had nerve conduction tests a few times. They are nothing to worry about, it just feels a bit uncomfortable and they give you little shocks to see how your muscles react. They hook you up by needle ( I think, last one was in 2012, might have been electrodes sorry, memory not as good as it used to be) to their machine. Doesn't take very long either, less than half an hour.

    Mine have been done in my hand and on my eyes. Some people have complained of pain but I have never that to be the case, just a bit of discomfort - it is an unusual sensation.

    Good luck.
  • mig
    mig Member Posts: 7,150
    edited 30. Nov -1, 00:00
    Phew hope I'm not too late Deb. Mig
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Thank you Ellen and Palo, I appreciate the insight. Mig it's next Tuesday, thanks. When I booked it back in June the end of September seemed a long time away, getting a bit nervous as it's getting closer. Thanks to my RA swollen knuckles I'm currently trying to work out how to get my wedding ring off before go :( .

    Deb x
  • stickywicket
    stickywicket Member Posts: 26,327
    edited 30. Nov -1, 00:00
    You poke the end of a piece of string through the ring toward the palm of your hand then wind the string round your finger reasonably tightly. Take hold of the string at the palm end and, with luck, the ring will slide over the rest of it and up your finger..

    It used to work for me but now I just wear my wedding ring on a ribbon round my neck as my fingers are all wiggly.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • palo
    palo Member Posts: 239
    edited 30. Nov -1, 00:00
    Deb,

    I don't recall taking my ring off at all. They could probably do the other hand. I've posted this on my MG facebook page as we all have these tests, so someone who has had one much more recently will remember better..
  • SandiB
    SandiB Member Posts: 26
    edited 30. Nov -1, 00:00
    Hi
    I had nerve conduction tests on my hands a couple of months ago. No needles involved just electrodes. It was a little sore as they do each shock but not as bad as I thought it would be. Don't worry you'll be fine xxx
  • frogmorton
    frogmorton Member Posts: 26,880
    edited 30. Nov -1, 00:00
    You poke the end of a piece of string through the ring toward the palm of your hand then wind the string round your finger reasonably tightly. Take hold of the string at the palm end and, with luck, the ring will slide over the rest of it and up your finger..

    It used to work for me but now I just wear my wedding ring on a ribbon round my neck as my fingers are all wiggly.

    What a fabulous tip!! Thank you Stickywicket!! :D

    I'll be there for pocket duties Deb!

    Love

    Toni xx
    Love

    Toni xxx
  • palo
    palo Member Posts: 239
    edited 30. Nov -1, 00:00
    Well mixed responses from our lot, some did have to take the ring off others didn't, so will have to see I'm afraid...
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Thank you all, Palo I think I'll have a go at taking it off just in case. SW, I'll give your method a go and let you know if it works for me, I rather fear the knuckle is now so big I'm stick. Hubby has said get it cut off and I'll get you a new one.......but I really don't want to do that. I think if I manage to remove it I'll settle for wearing it on a chain around my neck for a while.

    Deb x
  • stremlett
    stremlett Member Posts: 37
    edited 30. Nov -1, 00:00
    Hi D, I had nerve conduction tests done on both hands a few months ago. It gave useful info to the docs as to how to proceed. I was nervous but both hands took less than twenty minutes. They used electrodes but the leaflet sent to me when the appointment was made said that sometimes they needed to use needles. It was a strange feeling, a bit like a really strong TENS or electronic slimming machine thingy put up high but for a very short period. We are all different of course.

    What helped me was that I waited for ten minutes with a lady who was waiting for some kind of full body scan and she was afraid of being confined in the metal box and even more afraid of the results. This meant that I spent time trying to support her and forgot my own stuff. It is weird how that works for me. I need to use it more often!! Hope it all works out for the best. Sue T
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Thanks Sue, I have a TENs machine so that helps explain the sensations I'll expect. My nerve problems are mostly feet and legs so I guess there'll be lots of electrodes to cover the space :o . I have some problems with hands due to swelling in my wrists from the RA too, but I know what they are and cope with them, it's the tingly feet and legs that are keeping me awake that I need some explanations for.

    SW....I finally got the ring off, I couldn't do the string thing, but half a bottle of liquid soap, a lot of tugging and some cursing eventually did the job :oops: . The ring got stuck on the middle of my knuckle and was quite painful to manoeuvre, but the purple colour of my finger tip gave me the impetus to keep tugging till it moved! My ring is currently residing on a chain around my neck, but it feels really odd to take it off after 34 years. I'm just quite impatient for Tuesday to happen now so I can get some answers and a way forward.

    Deb xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    How about distracting yourself from the tests by dreaming of a new wedding ring? I have my original engagement and wedding rings tucked away, they became increasingly difficult to remove as the dross progressed (I regularly remove mine for hand washing and creaming and I don't want them clogged with gunk). I replaced them with bigger models which can still be donned and removed with some ease. When that is no longer possible I'll go up another size or two.

    I had nerve conduction tests done some time ago to assess the extent of my carpal tunnel situation. I was not brave, 'nuff said. :oops: I will be there, cheering you on and being secretly pleased it isn't me. :wink: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Thanks DD, that made me smile. As this afternoon draws near I feel more nervous, I've been baking for a Macmillan cake sale tomorrow and singing along very loudly to my ipod to distract myself.

    Hubby has promised to buy me a bigger wedding ring to replace the tight one, as I can still see the dent left by the original it seems entirely appropriate to upsize!

    Deb x
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    ((( ))) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Just back from neurology, the consultant suggested nerve irritation is the problem, he's arranging more tests, but suggests it's a catch 22 situation where if it's caused by the RA meds I have to decide whether I'm better dealing with the nerve symptoms or the RA!!! :oops: Feeling somewhat defeated and frustrated as I now have to wait for yet another appointment and may well not have a solution at the end of it. But I guess others are coping with much worse than me so I shouldn't grumble.

    Thanks for all the pocket dwellers.

    Deb x
  • frogmorton
    frogmorton Member Posts: 26,880
    edited 30. Nov -1, 00:00
    Oh Deb so you have to decide between a rock and a hard place then?

    I am sorry, but I suppose at least you know :?

    A balance maybe could be attempted to minimise the effect of each on you?

    Love

    Toni xx
    Love

    Toni xxx
  • stickywicket
    stickywicket Member Posts: 26,327
    edited 30. Nov -1, 00:00
    Not nice at all, Deb. How are you supposed to tell? Will the further tests help?

    It's perfectly OK to grumble. That's what we're here for. There will always be loads of people worse off that us but, unfortunately, that doesn't lessen our own problems. You must be feeling utterly down but this is your 'safe place' so please tell it like it is.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    SW and Frogmorton, the need to grumble is indeed here today, after a fairly restless night I'm definitely in a 'rock and a hard place' frame of mind. I have absolutely no idea how to tell what is cause or consequence in terms of the nerve issues, all I know is it's stopping me getting off to sleep and I'm unutterably weary :( .

    How I wish that some one, somewhere, had a reliable way of knowing what caused what and how to solve it!!! The neurologist was very sympathetic and understanding, and he suggests the next set of tests might throw some light on to how much damage is done, but are unlikely to show a cause. In the meantime I have a rheumatology appointment next Friday and I'm hoping it might be the consultant as it's almost 2 years since I saw him, I'll make sure a take a list of problems and questions and hope he might have some useful suggestions. The neurologist did say that the RA may be causing some of the tingling problems, but then again it might not!

    Sometimes it's very tempting to tell folks how rough things are when they say "you look tired, how are you", but like most of us I guess I usually settle for 'not too bad' and change the subject. Interestingly my hubby has had about 10 days of neck pain from an inflamed disc and he suddenly understands rather more of just how debilitating daily pain or discomfort is-I'm glad to say anti-inflammatories have improved his neck no end, but he has a greater insight into where I'm at!

    Thank you all for your support and understanding, it really does make a difference.

    Deb x
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Oh blast it, what a frustrating situation in which to be. This damn disease - the troubles it can bring in its wake are appalling. :( I am so sorry. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,327
    edited 30. Nov -1, 00:00
    ((( )))

    Oh Guttering, fascias and soffits! (That may be meaningless to you but a local van used to advertise it and Mr SW and I decided it formed a rather good 'swear' combination.)

    Deb, I think you have reached that place we all come to from time to time when you have reached the end of your tether and all you can do is tie and knot and hang on. Answers, or even partial answers may come either from the rheumatologist or the neurologist. Knowing how much damage is done might just give a clue as to how long it's been going on which, in turn, might help to determine if the cause is disease, meds or what. I can't remember if you are in our 'doubles' group. Many on here with OA seem to get nerve damage. I consider myself singularly lucky to have escaped that. Not that it would help much if you had. (GF&S again!)

    It can be infuriating when people - kindly - ask how we are. We don't want a long, boring conversation about our negative health issues (and they probably don't either) so I think most of us plump for something non-commital.

    Hang on in there and talk to us. We get it. ((( )))
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    SW I love the curse.....so expressive :lol: ....When teaching tiny people I had to settle on 'oh sugar' not nearly as expressive.
    I am indeed in the double club-RH and OA in several joints now, but I rather suspect the O came from the R in terms of walking oddly to compensate for stuff-I have a decidedly dodgy left ankle counterbalanced by a duff right knee so kind of hobble alternately, and OA is wrecking my top finger joints whilst RA has given me wonderfully miss shapen knuckles :oops:

    It really does help when I can unload on here, and I know that the sympathy and understanding are heart felt-thank you again SW and DD, you are both absolute stars in the support you offer others.

    Deb x
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Thank you for the very kind (but unwarranted) words.

    Doing the double is far from fun, isn't it? My GP and rheumatologist are positive that my OA has occurred as a result of joint damage caused by the PsA (which makes sense to me). My knees are the worst-affected by both, with others it's an either/or but, TBH, I cannot be bothered to decide which is causing the hurt because it won't alter the facts, will it?

    We do slide out from that uncomfy place between the rock and the hard place but it can take some time. Cold comfort, I know, but we'll be here all the way. ((( ))) xxx
    Have you got the despatches? No, I always walk like this. Eddie Braben