Whatever is going to happen next

Hi

I am a mum to one daughter who has just celebrated her 18th birthday.

She has a supra pubic catheter as she has urine retention without it, she is also unable to know when she needs the toilet soo as you can imagine this is difficult enough for her as she has to rely on me to clean and change her.

She has also been a little on the clumsy side and regularly broke her wrist, both arms.

Then a year and a half ago she lost the ability, after having a spinal, to use her legs. This has never really returned she can walk for a few steps, albeit very awkward gait, and can walk around in doors with help, as such she has to use a wheelchair out and about.

She took a year out of school when she was having lots of tests for a number of diseases it could be, but apart from telling us that she had sustained slight brain damage when born, due to an hospital error, they could find no explanation for her symptoms, they put all of her symptoms down to FND and she is waiting to go into a hospital for up to a month for extensive physio, OT and CBT, we have been waiting for the past six months and are no nearer to her going in, or indeed knowing if it will help at all.

Her newest symptom is that she has been blacking out, up to six times a day in fact.

We are due to go back to the Neurologist on the 28th March, am feeling extremely useless and do not know what to do for her.

Symptoms

- Headaches

-Urine retention

-Faecal incontinence

-Loss of feeling in legs and arms

- Pain all over

- Extreme pain in coccyx

- Awkward gait

- Can not walk without wheelchair and constantly falls over

- At times her speech can become difficult and she starts to stutter and can not string her words together

- Legs shaking

- Twitching of fingers

- Hands go into claw like positions

- Legs and arms at times lock and can not be moved at all, this can sometimes last for days

- Weight loss due to feeling sick whenever she eats

- Constantly feels sick and dizzy

This list is just the tip of the iceberg so to speak.

Am so glad that I found this website forum and hope that someday there can can be more understanding of this condition.

2 Replies

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  • Hi,

    I'm sorry to hear how poorly your daughter is and just how long you have both been going through this.

    My story only started on 24th January of this year. I had an incredible shooting pain down my right leg, resulted in my foot being dragged along the floor as I walked, whilst this has improved I am left with a 'drop foot'. After about a week it spread to my hands and as you describe my fingers go into a 'claw' position when I am in intense pain which can last for days (middle 3 fingers of left hand and last 2 fingers of right hand). I've been admired to hospital twice with suspected Clauda equina after suffering urine incontinence/urine retention, both times MRI of spine was normal. More recently my pain in leg and hands has improved but I began having absence attacks about 2 weeks ago, upto 13 times a day. About a week ago I also developed a stutter which nobody knows just how debilitating it is until you have gone through it. I'm seeing my neurologist later today and am still waiting for an MRI of my brain to confirm diagnosis but my neurologist has said he thinks its fnd. I must also add that I have 2 daughters aged 2.5 and 16 months who I look after every day.

    I understand your frustration and if nothing else knowing there are others in a similar position may be of some comfort.

    I hope your daughter improves soon.

    Best wishes sarah

  • Hi Sarah

    Many thanks for your reply, I think you are right it is comforting to know that others do know what you are going through.

    Good luck with the neurologist, and wish you a pain free day.

    I can only imagine how hard it is to also have to care for two little ones, I do hope you get support.

    Best wishes to you and your family.

    Teresa and Kay

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