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Do i have CP

emilygreen4
emilygreen4 Community member Posts: 6 Connected
Hi guys,
Wondering if someone can help I'm very new to this sort of thing so bear with!
I am 24 years old and I have from birth had a very abnormal walk. I was in and out of physio and splints when I was at primary school but nothing seemed to work and it wasn't perused anymore until recently. I went to my GP with aches and pains on my joints waist down from when I have been walking ect. I walk I would describe 'Like a duck' I tend to stick my bottom out and as I walk my legs do not flex they are always bent at the knee, I also have very stiff muscels. I have terrible balance and tend to trip over my feet an awful lot when my legs get tired.
Long story short I was sent to a Neurologist via a physio as her first thoughts was CP (bearing in mind I have never been told this -it came as quite a shock!). I then had an MRI scan on brain and spine, the brain scan came back clear but I have a slight abnormality on my cervical spine and the Neurologist aren't willing to peruse it any further as there is no concern.
I then was referred to Orthotics and am having splints made up for me to help with support whilst walking, she also said her opinion was CP. 
I just am not convinced that I haven't got CP now I have heard it, and after alot of research I can relate to it so much.
So my question to you guys is there any way a mild case of CP may not show on an MRI scan or would any type and severity of it show somewhere?
I know it can be a hard thing to detect and there is no definitive test for it so does that make doctors not label it as that even if they my think it?


Really struggling to find answers and a diagnosis for what i have. If anyone has any advice on what route to take/Who to ask I would be eternally greatful!

Thank you
Emily

Comments

  • Siouxzie
    Siouxzie Community member Posts: 5 Connected
    Hi Emily, I sympathise -  I am diagnosed with CP, and,like you,  it was a shock and something doctors assumed I knew already.  To answer your question - I have had MRI and CAT scans over the years and nothing shows up, I would have preferred an obvious problem which then might have been rectified. Have also gone in the GP, physio, Neurologist and back again circles. I walk badly and have poor balance and its tiring and annoying to be different and puts strain on the muscles.  You may not have CP, but it sounds much like.  Advice would be - get as much regular muscle stretching exercise as you can, the NHS should offer you a short course of physio,  with a list of exercises to do, but the best thing, if you can, is to have a sympathetic personal trainer who will encourage you and also manually stretch out your limbs.  I also go to an Osteopath regularly for really in depth massage and stretching.  This can be expensive but your health is more important than other things. It can be about not letting things get worse, as although the condition itself doesn't worsen, the bodies ability to cope with it does. Keep looking on the internet for any new research which would help - then pressurise your local health service.  Other contributors to the site have a petition going for help for adults with CP.    Best of luck
  • emilygreen4
    emilygreen4 Community member Posts: 6 Connected
    Hi Siouxzie
    Thank you so much for your response would you mind my asking that if nothing came up on your cat and mri scans how you got a diagnosis?

    Emily
  • Stayce
    Stayce Community member, CP Network Posts: 843 Pioneering
    Hi Emily,

    I would recommend you ask to be referred for gait analysis. Your orthotist, neurologist or Physio should be able to advise how to go about this or write to your GP for you requesting this

    Years ago Cerebral Palsy was not generally/always diagnosed by a brain scan - It was determined by a neurological examine by a neurologist (which you have done) and a detailed examination of a person suspected to have CP gait (e.g. movement patterns and way walk). I personally did not have a scan until adulthood which confirmed the diagnosis I had been given as a child through neuro examine and gait analysis 

    Gait analysis is done by pressure sensors being placed on key muscles to motion capture your walking pattern.
    This will give you a better indication as to whether you have CP based tendencies or symptoms 

    Did the neurologist say anything to you about your muscle tone?- As if they did another route would be to look at a spasticity clinic referral

    Hope this helps
    Best
  • emilygreen4
    emilygreen4 Community member Posts: 6 Connected
    Hi Stayce
    Thank you so much for your response I have made a note of everything and will bring it up in my next appointment with neurologist. See if I can get referred for a gait analysis I'll be honest from all my research I didn't come across that!

    Thanks again!

Brightness