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Newly diagnosed with mild cerebral palsy

PicklestarPicklestar Posts: 2Member
edited May 2016 in Cerebral Palsy
Hi, I'm just wondering if anyone could give me some information and advice really. I was diagnosed with mild CP about 3 weeks ago, bit surprising as I am 42! I went to see the neurologist because I have had a problem with headaches/migraines and have had for the last 7 years. I have a permanent headache, it never goes away, I wake up with it every day and I go to bed with it every night, I never get a day off. Sometimes, it is manageable, but most of the times, it is very painful. I can spend half the month with horrific migraines too, the aura type and they are so bad, they actually blind me for 30 mins before the pain kicks in, they last for 4 days, then there is 3 day recovery period. All in all, it's not a very nice way to be at all to be honest. I have managed just about for the most part, I have been on ESA for the last year though.

This CP is new though, the neurologist just kind of threw it out there on me and just left it at that. That's it. I know nothing more. I don't know what I means. I do know that my doesn't feel right and never has, I guess I put it down to 'other' things. I have tried to look online for information but it all seems to be aimed at babies. I guess most are diagnosed as babies though! I was born in the early 70's and from speaking to my mum, all the signs were definitely there, and during early development, but maybe back then it just wasn't known then??? I don't know what happens now. I feel as though I have just been left in the lurch. I feel as though I have maybe damaged my body (my back in particular) I don't know what to do with myself. I can't stand going to the doctors as I have to go so regularly due to this headache/migraine condition. I feel so lost at the moment!

I had blood tests taken also, I finally got some back and I have a Vitamin D deficiency which was measured at <10 nmol/L and letter said I need this course of treatment, which will take a little while. I'm thinking that is pretty low then? My body doesn't feel particularly good I have to say, it actually hurts a lot, everywhere, I feel like an old woman and so tired all the time, that with my bad head. I don't know, I suppose I just want to know what is going on with my body you know!!! I feel frustrated and I don't really feel very well to be honest, I just want to feel better and it's hard to feel positive when you feel as though you have just been 'left to it' when I don't even know what 'it' is :(

Any information would be greatly appreciated as I really am clueless as to what to do next, what this means for an adult and what this means for an adult newly diagnosed. Many thanks :)

Apologies if this has come out as muddled up gibberish, combination of head pain, body pain and deficiencies seems to have left my mind/memory etc. all over the place!
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Replies

  • PicklestarPicklestar Posts: 2Member
    I meant to say that I do know that my BODY doesn't feel right, stupid brain.
  • RockyRocky Posts: 76Member Listener
    Hi, Strange as it seems, it is quite common for people to receive a diagnosis as an adult. This does not mean the cerebral palsy has just occurred, just that this is the first time the official diagnosis has been mentioned. Cerebral Palsy is caused by damage to the immature brain so before, during or shortly after birth. The brain matures at around 6 years of age. Obviously most people are diagnosed as children and that is why the information you have read mainly relates to children. However, for a number of people who are now in their 30s, 40s, 50s or older, the first they know about having CP is when they visit their doctor for something and it is mentioned because the diagnosis is on their medical notes. Often parents did not want to accept the label of cerebral palsy or felt that it may adversely affect their children especially with education so a child could grow up just thinking they had a developmental delay or that their arms or legs did not work properly. Getting the medical diagnosis later in life is then quite a shock. So although you have only recently been given this diagnosis, you will always have had a form of cerebral palsy. There is information about cerebral palsy on the Scope website and your neurologist should be able to tell you more.

    What is the neurologist saying about the migraines? There could be many causes for migraines, food intolerances, medication, hormonal inbalances, menopause (although you are a little young but you could still experience peri menopausal symptoms). Have you been prescribed any medication and has that been effective?

    Also as you say, a Vitamin D deficiency can cause all sorts of problems and make you feel really bad.

    Going back to your cp, it depends on how you are affected as an individual, you may have to look at pacing yourself a bit more or taking medication if you have a lot of spasms or pain. Physiotherapy could be helpful but often it is not available under the NHS for adults with cp (depends where you live) so you may have to pay privately.

    Good luck.
  • Jill2013Jill2013 Posts: 13Member Listener
    Hi I am 45 and I found out 3 years ago that I had cerebral palsy. I knew I had problems as I child but was told to get on with it by my parents after I had treatment. It wasn't until I moved and changed doctors that I mentioned im still getting problems with my legs and it seemed to be getting worse when I was told that was normal with my condition. So I asked what condition and they told me. It was a shock at first but it explained my years of struggling and now I have been able to get the right support I need.
  • RockyRocky Posts: 76Member Listener
    Thanks Jill, this does seem to be quite a common issue. I suppose parents in the 60s and 70s in particular did not want to attach a label to their child for various reasons one of which may be that children diagnosed as having a complex disability like CP may have been institutionalised. Perhaps they were just putting the child first rather than focussing on the condition. It can be a shock to hear the news later in life but glad you have been able to get the support you need.
  • humand12humand12 Posts: 6Member Listener

    Hello Picklestar, Ollie my c.p worker highlighted your story to me. I too have mild cerebral palsy. I wasn't told of this until January 2015, I'm 61 years of age. Please read my blog, below.

    I'm sorry to hear about the migraines that you suffer from. I can't imagine the pain, it sounds so horrible. I see that your email was dated May 2015, so I hope your pain has improved by medication. What is ESA?

    Regarding c.p I saw my G.P to have the diagnosis confirmed. I saw the neurologist last November 2015. I have ataxic cerebral palsy. I feel better for knowing, as there is now a reason why I find  simple things so difficult. Once I had contacted my G.P, I was then able to get help for myself to improve my life. I do hope you have found help to improve your life. Good luck! Paula Park

    See Blog below 6 stories down

    https://blog.scope.org/page/5/?ga=1.90325599.64012869.14503404

  • ermanatorermanator Posts: 1Member Listener
    ack! I wrote my whole life story the clicked wrong and lost it all! So... out of time to retype. For now, just looking for anyone still following this post. I'm thinking perhaps I'm the next adult that could be diagnosed with CP. Is it diagnosed with a brain scan, even if only sypmptoms I can see are hip, legs, feet?
  • Richard_ScopeRichard_Scope Posts: 1,663Administrator Scope community team
    Hi @ermanator ;
    Thanks for posting and a warm welcome to our community. As CP is a neurological condition. An MRI scan is one tool used to identify whether the brain is displaying anomalies consistent with CP.
    I wasn't diagnosed by MRI scan as my CP is not what would be classified as mild.


    Scope
    Specialist Information Officer - Cerebral Palsy
  • larissaslarissas Posts: 2Member Listener
    Chiming in was just dx with very mild CP by my neurologist. I'm 46. I'm also told that there is a genetic component as my mom also has mild CP.
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