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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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  • kate74271
    kate74271

    Posted

    Wow...a lot of replies! ... mostly saying the same thing 😯 rather worried now 😣

    • maryanne45
      maryanne45 kate74271

      Posted

      Look after yourself, I know it is hard with being a mum. But it is strangely easy not to notice that you are going numb in saddle and legs (or leg) and losing bladder, bowel and sexual function. Mine happened more gradually but the combination of symptoms for CES kept progressing. The good news about CES is that if you recieve decompression in time it will halt the progress. The longer you leave it is often what your left with or have to work with afterwards. Take care
  • naomi.plus.3
    naomi.plus.3 kate74271

    Posted

    Ask about Transverse Myelitis. It is inflammation of the spinal cord. My brother was diagnosed with it in June of this year.
    • naomi.plus.3
      naomi.plus.3 maryanne45

      Posted

      I looked that up and it doesn't sound the same. He didn't have the shooting pain or pain in the lower back. He became paralyzed within 12 hours of being sick. He went to sleep thinking he was just sick, he got up and got something to eat, couldn't eat it, and his legs were going numb, so he laid back down. When he woke back up, his legs were completely numb so he had to flop off the couch and drag himself to the kitchen so he wouldn't throw up on the carpet. He was in ICU for several days because it came on so suddenly.

    • maryanne45
      maryanne45 naomi.plus.3

      Posted

      Sorry to hear about that. I hope he had some recovery, you sound like a supportive family member to educate yourself on his illness.
    • naomi.plus.3
      naomi.plus.3 maryanne45

      Posted

      Thank you. He is able to stand and walk with a walker. He is still completely numb though.
    • maryanne45
      maryanne45 naomi.plus.3

      Posted

      Thats good to hear he still has some mobility. I hope he is adjusting to things and still making some recovery. I find these kind of forum can make me feel more accepting and lucky of what you have when you hear of others stories. I also think it makes a really big difference if your family or friends can understand the illness. I have not heard of this condition before, it must be rarer too.
  • kate74271
    kate74271

    Posted

    Things are starting to get strange. MRI is clear, all looks normal. Neurologists said it's the thing where my immune system is attacking my nerves but don't think I need treatment for is as feeling came back and I can walk short distances without support now.

    THE strange thing is that my entire body has become hyper sensitive, keep getting tingling and dizzy spells (don't normally get them often unless I'm pregnant[definitely not pregnant) and keep getting the feeling of spiders all over my legs that lasts for hours at a time. Bloods all came back normal. Got the great joy of more tests!

    ANYone any ideas what's going on cos doctor's don't have a clue!

    • maryanne45
      maryanne45 kate74271

      Posted

      Hi Kate, very sorry to hear you've not yet had any luck getting to the bottom of this. It is good to hear your walking more too. I guess they will be testing you for MS now with a brain MRI? I am having one of those too, to rule it out for me after some similar funny symptoms recently that I though was a bit of a relapse or hopefully just a flare of the CES. I do hope the doctors are paying more attention to you now. Let us all know how you go with your tests and more tests...

    • kate74271
      kate74271 maryanne45

      Posted

      Ye they want to do a full body mri and a nerve conduction test next. JUST waiting for an appointment now! Made the mistake of discharging myself from hospital so gotta wait again sad but rather be waiting at home than be stuck in hospital.

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