Tingling and numbness everywhere

salamander
salamander Member Posts: 1,906
edited 25. Sep 2013, 02:35 in Living with Arthritis archive
It's driving me mad. It started with my left leg and now I'm getting it all over my body. Saw the consultant on Saturday, who ordered an MRI scan but I've got to wait ages for that. I feel as if I've got insects all over me and it's got really bad tonight. I don't have any idea how to stop it or improve it so any ideas very gratefully received.

Comments

  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    Oh dear salamander, my sympathies, to me that sounds like neuropathic pain, What did your consultant say? did he say it could be caused by Arthritis drugs? I am surprised s/he didn't prescribe anything for you to try until you get your mri. If it was me I would be seeing my GP to see if he can prescribe something for you, meantime, you might want to try some Epsom salts in your bath not too hot it may or may not help, I soak my hands and feet in it as I have a neuropathic condition, good luck I hope you get sorted out soon (((()))).............Marie xx
    Smile a while and while you smile
    smile another smile and soon there
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    just because you smiled I wish your
    day is full of Smiles
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    So sorry to learn that you too have got the tingles and numbness everywhere Salamander. I don't know what drugs you take but my nightmare started nearly two months ago and I have to say is that you are lucky to have a rheumy who referred you for an MRI at least.

    But the rest is hellish as I know only too well and has taken me on a merry party (NOT!). At last it seems to be dying down, which sort of suggests that it's the Methotrexate with me I think. But I'm still not sure if I don't just have a very weird type of RA that doesn't seem to do much to swell my joints but simply goes for my soft tissue and generally confuses my medics and me alike.

    All I can suggest is that you ask for something to help you sleep if, like mine, yours plays havoc with you all night every night. I'm now taking Mirtazapine, an anti-depressant, because I wasn't coping well at all. My GPs are the only ones who are trying to address this presently (rheumy just suggests a steroid injection) and they won't send me for scans or refer me to a neurologist so I'm just really hoping that it stays away now.
    If you get lemons, make lemonade
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    Thanks for the Epsom salts tip Marie, I'll get some tomorrow. My rheumy thinks it is caused by the Enbrel and the neurologist (whom I saw on Saturday) has no idea, hence the MRI, which is the only way to find out what's going on, apparently.

    Mat, apparently steroid injections can help if it is demyelination, which is what they are looking for with me and I did feel better on a higher dose of steroids. So might be worth a try.

    My neurologist (who is a bit of a prat) said my rheumy could have ordered the scan. On balance, I wish she had as I've had to wait a month for an urgent appointment and, even then, had to ring up to find out where it was. Neuro said, if it doesn't show anything ,I'll just have to live with it. As I said, he's a bit of a prat......

    I don't really know what to think. I felt reassured on Saturday that it was nothing serious but the escalation of the symptoms over the past day has worried me a bit.
  • Mat48
    Mat48 Member Posts: 1,075
    edited 23. Sep 2013, 17:33
    Well having lived for 7 weeks with degrees of burning ants every where and icy cold wet calves and sometimes feet too (like wearing wellies that have snow inside them) you have all my sympathy. Mat xx
    If you get lemons, make lemonade
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    Thank you and you have mine too. I hope you get the ants under control soon. I get icy cold feet as well, my sister bought some slippers that go in the microwave but I can't walk in them!
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    Oh that's weird about the slippers. I only got the cold feet and calves back yesterday after falling down the stairs and hurting my back rather badly on Friday night :shock: - I wonder can demyelination (had never heard of this before you wrote it) be ruled out by a GP doing a basic nerve conduction test do you know? Mine told me that there was no point in me seeing a neurologist or having an MRI because the nerves affected were too fine and he was thinking that his nerve conduction test had ruled out that this was progressive or neuropathic because my toes and feet still responded to his touch? I'm grateful for the advice on the steroids too but will wait and see how I go because they make me go bipolar in both oral and IM form and as I've been severely depressed and insomniac lately I don't think I could bear more! Mat x
    If you get lemons, make lemonade
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    No, it can only be diagnosed through MRI.

    As I understood it, you can have a sensory neuropathy which is about how things feel, a motor neuropathy which involves muscle contraction and movement and autonomic which rules the unconscious things like breathing and heart rate. The motor one, can be ruled out by simple tests which involved manipulating my legs in various ways. He was clear I didn't have the latter just from a physical examination.

    An MRI shows where the inflammation (if there is any) lies. I'm not entirely clear what else it shows up apart from demyelination (which is when the myelin is stripped off the nerves and causes them to malfunction.) It's quite possible I don't have it and there is another cause but that is a major thing, which is why they are checking. The MRI shows everything, as far as I understand.

    I don't think the cold feet has anything to do with the tingling as I've had them since getting RA and the tingling may be to do with Enbrel. The other thing I'm getting checked out is my Vit B12 levels as lack of that can cause similar symptoms - so can about a million other things as far as I can see.

    Hope this helps.
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    Not sure if I was clear enough in my last post. I was told I have sensory neuropathy and he said it would be unusual to have widespread tingling without having severe motor problems, which was reassuring. So I'm not so concerned but more worried it might be something I have to live with!
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    Re B12 - do you take folic acid? If so be careful because this can mask B12 deficiency and skew the results. Also I have learned that restless leg syndrome can go with polyneuropathy so may be worth looking into as well. X
    If you get lemons, make lemonade
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    No I don't. Been off Mtx for a couple of years. I've never had restless legs though have heard a lot about them!
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    Well I led my GP to RLS - who then agreed (why would he agree with me :? ) put me on a dopamine drug which led to sudden narcolepsy which led to an overnight hospital visit. Then I read how people experience this syndrome and decided my own stuff was just about being in pain or anticipating it and just the neuropathy making me need to try to shake out the numbness and ants all night!

    So RLS was one possibly big red herring for me I think but no real harm done and I've learned about one more misunderstood condition now. So many conditions can cause PN and my GP feels why would we look for the possible when we can look for the probable. But then he won't even take my vitamin D or T3, refer me to a neuro or send me for an MRI - just puts me on a dopamine agonist, then anti-depressant and now offers a steroid jab (which I'm spurning) so I'm feeling a tad cynical.
    If you get lemons, make lemonade
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    I'm not surprised you are feeling cynical. I wouldn't want to take something like that without a definitive diagnosis. I hate that 'try it and see' approach.

    My rheumy expected the paresthesia to disappear and I did too. I haven't told her it's got worse but have an appt at the end of the month. It's just steroids at the moment for me.
  • DebraKelly
    DebraKelly Member Posts: 398
    edited 30. Nov -1, 00:00
    Now this is strange, because I too have been getting this off and on the past couple of weeks in my left leg, however my RA is in my right leg? Weird!
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    It's unpleasant isn't it Debra? I have no idea what to do about it.
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    I know this sounds impossible but you do eventually just get uss to it like low level pain. I've had mine for 3 months now and I have to think whether its still and issue now - and it is but, like an annoying noise it just goes into the background. Mind you I think mine is milder than it was.
    If you get lemons, make lemonade