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Thought I was in the clear...now my legs are cold numb and tingly

Posted , 4 users are following.

sarah_29765
sarah_29765

Hi guys and girls, I am 34 year old NZ mum and I had CES about 3 years ago, after 3 operations and lots of physio and excersize I retuned back to work, bit by bit, slowly working my way up to full time over the period of 8'months. I actually feel pretty fortunate and feel that Iv made a pretty amazing recovery, I got the mobility of my right leg back (it was dragging) although this is still very numb and weak, it appears normal to those around me, and I no longer walk funny, and my bladder only seems to play badly up certain times of the month (by play up I mean weakness and high frequency) the pain is pretty good too....compared to what it use to be like. The night before my first urgent operation I had hot cold sensations filling my legs,it felt like they were being dipped in warm or cold water, it was one of the strangest things I have ever felt, I hadn't realised that going to the bathroom every few min was a warning sign (I actually thought I must of been pregnant). Anyway recently I'm getting cold patches (large patches) and weird almost pleasant cold tingling around the butt and the back of the legs and wondered if anyone else gets similar sensations?, I hate rushing back to the docs and don't want to live in fear that the CES will raise its ugly head again, I also want to avoid too many more MRIs as I have already been exposed to far to much radiation from these. Was really just hoping that another CES patient could tell me their ongoing symptoms and issues that they have just managed to live with.

0 likes, 3 replies

3 Replies

  • chrioli
    chrioli sarah_29765

    Posted

    Sarah

    I am 1 11/2 years post surgery and as you know we are all different but share similarities. I very much have the same sensations you mention in the buttocks and the hot and cold. I however have a lot of pain in my heels and lower legs. I have bilateral AFO's from foot drop and leg fatigue. Also my quads and knees just give out. I believe the sensation changes are permanent damage so it sounds like you are lucky they are pleasant!!

    • sarah_29765
      sarah_29765 chrioli

      Posted

      Thanks for your reply, yes I'm very grateful to not have extreme pain like I use to, I ended up going to get it cheeked, I have been put on a strong short course of steroids which seemed to have stopped the strange leg sensations. Will go back and see the Nero department in May, and hope for the best.
  • faye70665
    faye70665 sarah_29765

    Posted

    Hi,I can tell a flare is coming when the feet or foot suddenly begins

    to cramp or hurt.Usually within minutes or a couple hours my

    feet and legs go numb.I always have saddle numbness.I have to

    say that sometimes will feel like feet are being rinsed with cold

    water instead of foot cramps.Lets not forget that twice in one day

    I had foot drop.I know to grab the Walker.Have a nice day to all!

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