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Losing feeling and use of both legs. not sure why. 27yr old with 3 boys under 4yr!

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kate74271
kate74271

Hi, I'm 27 yr old and have 3 boys under 4yrs old. The doctors think I may have compressed nerves in my lower spine and were very vague about what may or may not happen. Essentially they said it may put me in a chair, it may not. Apparently they have no real way of telling. Either way, I've had to stop working. I struggle to walk or even just balance for more than 5 min and i have had loss of feeling in my lower body. Even sex is affected as i cant feel much and ive started loosing control of my bowels/bladder(I don't know I need to go until last minute so have a "potty" in my kitchen for emergencies!) I'm now looking at getting a wheelchair as it's the only logical way for me to do anything with my eldest been at school and a baby in a pram, I don't drive so have to walk and with a pram I can't use walking aids (sticks/frames) but with a chair our baby can be strapped to my chest whilst my eldest 2 walk at the side (have found a way of attaching handles for them!) I'm not sure what has caused it all as I'm still going through the investigation stage. Not had scans yet as have to see physio first (next week). erm... pretty much just looking for advice from anyone who has been/ is in the same situation please?? Any ways of making it easier? Has it reversed at all for anyone? Do you ever stop feeling useless and in the way?? (My family are very supportive but I'm not use to having to ask for help all the time!)

0 likes, 32 replies

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  • laurie_14419
    laurie_14419 kate74271

    Posted

    Over the past couple years, I can barely walk and not  so sure my diagnosis of Parkinsonism is completely accurate?! An MRI does show bulging discs in my sacral/low lumbar region...but the neurologist says it shouldn't cause the issues with my walking. Do your legs feel heavy?

    • kate74271
      kate74271 laurie_14419

      Posted

      They do feel heavy yes. Sort of like they are made of metal. I lay on my bed and feel like my legs are going to sink. They now have the added partial numbness too.
    • kate74271
      kate74271 laurie_14419

      Posted

      Having had a quick look, there is evidence to show that Parkinsonism can lead to loss of function. rolleyes

    • laurie_14419
      laurie_14419 kate74271

      Posted

      I sure hope you can find what is going on and get it fixed. Not being able to walk is horrible...especially when you are so young with chikdren. I was 60 when all this started happening with me...which is still way too young for a very fit and active person to endure.
    • kate74271
      kate74271 laurie_14419

      Posted

      I hope you find out exactly what is wrong too. Hopefully it's something treatable!

  • laurie_14419
    laurie_14419 kate74271

    Posted

    You need to get somes images, an EMG & nerve conduction test. I also had a lumbar puncture to rule out MS. How is your upper body coordination?

    • kate74271
      kate74271 laurie_14419

      Posted

      Upper body is fine and dandy. Scans and stuff are to come after seeing physio. Apparently there is a guide they have to stick to or they get in to trouble... however, this was before my legs started going rolleyes maybe it will move quicker now??

  • BarbP303
    BarbP303 kate74271

    Posted

    I've never heard of a protocol that has to be followed to diagnose you I don't see what Hornets going to do to take some Imaging of your brain and your spine I too was thinking the MS which is what I have I am newly diagnosed with it and all the symptoms you're talking about I experience so you need the Imaging of your brain and your back. If it's not a MS you know maybe there's some stenosisort. My heart goes out to you I know this journey for me for my diagnosis has been almost a year-long quest because you get a neurosurgen that think everything else in the world. so that they can get paid for running all these tests why you hang in the balance my heart goes out to you hun I really hope you find out something soon.

    • BarbP303
      BarbP303

      Posted

      (Well Hornets needs to be) I don't see the harm in running an MRI of your spine and brain.. Auto correct grrrrrr

  • maryanne45
    maryanne45 kate74271

    Posted

    Hello,

    please get yourself some urgent medical attention and possibly have a read of the Cauda Equina Syndrome discussion page on this site. An MRI will show if your symptoms are being caused by a large disc prolapse. For myself CES was caused by a relatively smaller disc problem at L5/S1 in the lumbar spine. I am not a doctor but have lived through CES. You describe several red flags associated with the disease. CES can require emergency surgery and seems to be under recognized in the medical profession at times. You may need to leave caring for others so you can see to your health. Take care

    • maryanne45
      maryanne45

      Posted

      If your bowel and bladder dysfunction has just started than you still have time to retain the functioning. If you experience bladder retention of saddle numbness (numbness where you would sit on a horse) along with progressing leg numbness and or back pain and muscle spasms, this is a classic way of Cauda Equina syndrome showing up. Please go to the ER if you cannot urinate. It can indeed rapidly put you in a wheel chair if it progresses and this will be what your doctor may be (indirectly) reffering to. The progression of CES is preventable with timely medical care please get checked out.
    • laurie_14419
      laurie_14419 maryanne45

      Posted

      I was wondering about CES myself...with my progressive troouble walking...as my MRI shows bulging discs in area of L5/S1...but my neurologist is stuck on "atypical parkinsonism".

    • maryanne45
      maryanne45 laurie_14419

      Posted

      Hi,

      I hope you can get a second opinion. I don't know about parkinsons disease and I am sorry to hear you have that. I had only more minor disc trouble in this L5 / S1 area, it was not seen as pushing on spinal cord in MRI, but it was apparent when I had surgery why I had compression as there was a nerve split in two getting pressed.

      There is an interesting article online by canadian chiropracter organisation of some kind I think, which show a study on a woman that had disc trouble at this L5/S1 level and the slow onset CES, it would not resolve until this area was decompressed although she had a worse disc at L4/L5. It has helped me understand. There doesn't seem to be as much information out there on the slower onset kind, but my symptoms are identicle to any other CES survivor.

    • laurie_14419
      laurie_14419 maryanne45

      Posted

      Thanks for the info...I will researchsmile Would love to find that article.

    • maryanne45
      maryanne45 kate74271

      Posted

      Hi yes that was the one. It was the only one that made any sense of what happened with me after my experience. I had the saddle anesthesia and a couple of times had gone days without bladder or bowel being able to empty before I got surgery. It happened over a couple of months but just kept slowly getting worse and feeling of not being able to walk, with very bad pain and one leg going very numb. I had to get a surgery done by a nuerosurgeon and it stopped it getting worse but I have not got it all back and still have alot of pain and some trouble with one of my legs and on and off trouble with the more private issues in bladder and bowel but walk ok and did ever not stop walking, which is lucky. Alot of Cauda Equina will show on an MRI as a bad central disc on spinal cord but mine did not. I was lucky to have a physio and GP that diagnoised it, from the red flags but even with that could not get a refferal to be accepted by any surgeon as I live in a regional area. There is an online CES support group : ihavecaudaequina .com there are people on there that will answer questions. I do hope you can get an MRI soon it will show you whats happening and get some advice. Look after yourself and take yourself quickly to a medical person you feel you can trust to listen and look out for you.
    • maryanne45
      maryanne45 kate74271

      Posted

      I was just trying to post that there is a link to a CES support group 'cauda equina syndrome association' on the other part of this site. You can ask questions there of experts. It had moderated my reply.

    • kate74271
      kate74271 maryanne45

      Posted

      🙁 that's exactly how mine started. Going to A&E tomorrow as children will be at nannies. Hopefully it can be sorted soon.

    • kate74271
      kate74271

      Posted

      ... well... hopefully it's not that and is something that is reversible...

    • maryanne45
      maryanne45 kate74271

      Posted

      I hope you can get to the bottom of what is happening to you. CES can be stopped getting worst that is why I wanted to post the information for you and there is time to act - with the slow onset or partial one especially. I Hope your feeling better & please let us all know how you got on when you can. Take care.

    • maryanne45
      maryanne45

      Posted

      If it is CES, there is recovery too I did not mean it to scare you like there is no recovery. I am also just in a place of my own at present of accepting the recovery (or lack of) so I hope it did not colour my comments too much. But it can also be permanent & stop walking & it is not something you want to go too long without seeing a specialist that will listen to you and have the MRI lumbar , imaging that is why there are support groups and public education starting I think. I did not like to think of another mother thinking about getting in a wheel chair through lack of doctors listening, whatever it turns out to be.

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