A new cerebral palsy diagnosis

At the age of 2 I was being treated for spastic Monoparesis cerebral palsy, although I didn’t know I had ever been diagnosed.

Then at the age of 46, having arranged myself an MRI scan, I was diagnosed with the same condition, but he didn’t specialise in cerebral palsy. I was then referred to a neuro physio who noted that two of my limbs were affected and not one, which made my diagnosis spastic hemiparesis, not monoparesis.

Learning about the first diagnosis at 2 never really made sense. I found myself looking at my notes with my new specialist who collaborated with his team to assess the MRI scan results. Not only was I unaware of the original diagnosis as a small child, but this new diagnosis was also incorrect.

I now know for sure that the correct diagnosis is a Mild Hemiparesis cerebral palsy, because that is synonymous with an abnormal variation in muscle tone. The original diagnosis never made any sense because I do have an abnormal variation in muscle tone on my left side, not spastic or floppy limbs.

I’m not sure how the specialists missed as a child that I had no working muscle mass on my left side and yet I was diagnosed as a ‘spastic cerebral palsy.’

1 Dec, 2017

4 thoughts on “A new cerebral palsy diagnosis

  1. I am happy for you that you finally have the correct diagnosis and also sad at the lengths you had to go through to get there.

    If it helps you make sense of your life, then it’s been worthwhile.

    1. Thank you. I am particularly sad on the lengths I’ve had to go through, but finally grateful that I have now got the right diagnosis.

      This diagnosis now helps me make sense of all my hardships. It’s sad this has been my life. It’s not something I would want anyone else to go through.

  2. Yes, it is very sad that you had to deal with these problems for all of your life without even knowing what they really were and without the support of your parents.

    It’s just hard to imagine, considering that would have been like not helping my daughter and expecting her just deal with her issues. We did grow up in a different age when these issues weren’t really talked about, but the least they could have done was let you know that it wasn’t your fault.

    It’s never fair to make your kids feel like everything is your fault, like my parents did to my siblings and I. If it came down to it, I would rather see people not have children if they don’t want to take care of them.

    I try not to feel this way, but so many times I think I would have rather not been born at all considering what I went through.

    1. Thanks Randy. Of course, I’m not happy about my experiences, but I can’t do anything about them. I’m sure you feel the same way about what you had to deal with.

      All we can is do what’s right for our own children and put our experiences behind us. It’s just not worth living with the stress and anxiety.

      I think it important we either deal with the issues surrounding our experiences, or let them go.

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