A new CP diagnosis

At the age of 2 ½ I was being treated as a Spastic Monoparesis Cerebral Palsy, although I didn’t know I had ever been diagnosed.

Then at the age of 46 wanting to find out what was wrong with me, after a self-imposed MRI scan, I was diagnosed with the same condition, not knowing I already had a diagnosis. Then on being referred to a Neuro Physio, she noted that I had two limbs affected not one, which made my diagnosis Spastic Hemiparesis, not Monoparesis.

Unconsciously I couldn’t have been settled on the diagnosis, because I recently found myself looking at the notes from the last consultation with a new Specialist who collaborated with his team to assess the scan results. His letter clearly states the birth injury problem. I can’t believe that not only didn’t I know of the original diagnosis, but that I have also been living with the wrong diagnosis from the age of 2 ½.

It’s been 8 years since my MRI scan and 7 years since my last Consultation with a different Specialist and through looking at the notes to my last consultation, which I have now only re-read I now know for sure that the correct diagnosis is Mild Hemiparesis Cerebral Palsy. I wrongly assumed that the new information I had from my last Consultation gave me the same diagnosis, but it turns out that was wrong.

The original diagnosis never made any sense to me because I have an abnormal variation in muscle tone on my left side, not spastic or floppy limbs. But it’s all I’ve known. As a child, I had no working muscle mass on my left side and yet I was diagnosed as a Spastic Cerebral Palsy.

Mild Hemiparesis Cerebral Palsy is an abnormal variation in muscle tone, in my case brought about through a stroke from an inadequate blood supply to an artery in the right side of the brain and that is what happened and is what I have.

All my neurological difficulties and other confirmed diagnoses I’ve written about in my personal blogs still stand, so I also have closure on those. But I’m happy because this new information now brings closure on the diagnosis itself. I can’t believe that the original diagnosis was incorrect.

What I find sad is that I’ve had to work through these things on my own without the support of my parents and that it’s taken me 54 years to understand my presenting neurological issues and to have the right diagnosis.

1 Dec, 2017

4 thoughts on “A new CP 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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