Cerebral Palsy
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"bombshells" dropped on me at my ESA assessment

AndyMacAndyMac Member Posts: 2 Listener
edited October 2017 in Cerebral Palsy
Hi everyone, I'm new here so this is my first post!

I have dyspraxia and bipolar.  I wouldn't mind some guidance in relation to a couple of "bombshells" I had dropped on me at my ESA assessment last week, which kind of knocked me for six a bit.  

Before I was officially diagnosed with dyspraxia, I went for a scan and learned I had a condition known as agenisis of the corpus collosum, quite a mouthful!  Basically the two halves of the brain aren't connected properly.

I take Priadel for my bipolar, and while it's a common side effect anyway, have been having terrible problems with water retention, or oedema, lately, to the extent I've been finding it very difficult to walk as my legs and feet are so puffy and swollen.  I get twitchy spasms in bed too.

While going through my completed ESA form, the assessment guy I saw alerted me to some notes from one of my surgery gps, not my regular one, mentioning the corpus thingy, but also spastic diplegia.  I was like eh, come again, what's that, blinding me with science a bit there...basically cerebral palsy.  I walk with a peculiar gait anyway, and have struggled with milestones growing up, but was completely taken aback by this as to my knowledge, it had never been mentioned before.

The assessment guy said that quite apart from the water retention, the corpus thingy could be causing further "brain damage" affecting my mobility.  My regular gp said he'd sort me out with a cardiology appointment, still waiting to hear.

Having trouble getting my head round it all, a lot to take in, implications for the future etc.  I've asked a local neurological support group if they provide help relating to the conditions.  I'd like to hear from anyone else in the same boat.  I'm 46.  Thank you.

Replies

  • AlexAlex Posts: 1,325 Scope community team
    Hi @AndyMac,

    Welcome to the community. That's quite shocking that they hadn't told you! 

    I hope we can support you come to terms with the news. Many people on the community have experience with spastic diplegia. There's also a wealth of information on the Scope website.

    There are have been a couple of similar posts on the community from adults finding out about a diagnosis in later life that you might find interesting.
  • AndyMacAndyMac Member Posts: 2 Listener
    Thank you for that nice welcome Alex  I know, it's been a lot to take in and come to terms with.  I think the assessment guy was a gp as well, cos he tested my heart rate/blood pressure, my reflexes by bonking my knees with a hammer thingy, and did some co-ordination "games" where I had to follow his pen round the room with my eyes, then touch my nose then his finger faster and faster.  He said a neurologist should be able to tell me more, so here's hoping.  I'll have to make some appoinments.  Still waiting to hear re the cardiology and local support group.  I'll take a look at those links, lots of reading!  Thanks very much for your help, look forward to chatting with you and others some more on here.  :)
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