Are there any specialists in the UK to help/advise lady with spastic diplegia cerebral palsy. — Scope | Disability forum
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Are there any specialists in the UK to help/advise lady with spastic diplegia cerebral palsy.

Tash026
Tash026 Member Posts: 10 Connected
edited February 2017 in Cerebral palsy

I am wondering anyone could help with the following:

I am a lady who was born with Spastic Diplegia cerebral palsy.  As a result of this I was told I had a retained moro reflex, which means I startle very easily, get very anxious, find it very hard to physically relax and tense up my body when I go to do something e.g hang the washing out.  I am also finding it more difficult to stand and walk especially going downhill and crossing at pavements.


I also suffer from nocturnal bruxism which gives me TMJ symptoms of severe vertigo, headaches and jaw pain.  As a result of the retained moro reflex I have also been diagnosed with General Anxiety Disorder.  I was on 10mg escitalapram, however that made me have very vivid dreams, so my doctor now wants me to try 150mg Trazodone.


Can a retained reflex be integrated with someone who has spastic diplegia cerebral palsy? or is the retained moro reflex just something that I have to live with?  


Would Tizanidine (muscle relaxant) help me physically relax?  Can it be taken alongside Trazodone?


Are there any specialists/neurologists in the UK that have experience of any of my conditions?


I would like some more information to take to my GP on Friday, so If you could advise on the above it would be really helpful.


Kind regards

Comments

  • Stayce
    Stayce Member Posts: 699 Pioneering
    Hi @Tash026
    Yes, generally speaking muscle relaxants of any kind will help you to physically relax

    Yes there are many neurologists in the UK ask your GP if you could either be referred to a neurologist who specialises in Cerebral Palsy or ask for your GP to be referred to a spasticity management clinic as most of these clinics will have a neurologist as part of a multidisciplinary team of specialists who will help you with all the conditions you mention 

    Hope this helps

    Best wishes 


  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,682 Disability Gamechanger
    Scope
    Senior online community officer
  • Rainbow_wheelz16
    Rainbow_wheelz16 Member Posts: 30
    It is very common in cp to have retained reflexes. I too, have them. It is as a result of the  CP,  so unfortunately,  it cannot be removed as it's part  of  the original injury. I also find that fatigue can also seem to make them more prominent.  
    I have  complex posture issues that affect my seating in my wheelchair. I cannot  use a tilt in space and have to be positioned correctly, otherwise I  have a reflex response as a full body spasm. Does anyone  else experience  this?

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