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.
-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.