I was born in 1969. My mum had blood poisoning when she was pregnant with me as she was rhesus negative and im O+. so i was born with jaundice. I also stopped breathing for a while shortly after birth but cant remember exactly how long my mum said it was. (She died in 1991)
From what she told me i was a floppy baby that had severe difficulty feeding i couldnt sit up unsupported, crawl, walk or speak by 2 years old. I had epilepsy till age 7. I was found to have underactive thyroid and put on thyroxine i eventually learnt to walk and co-ordination difficulties were barely noticeable by secondary school age (11+ in uk) I have always had speech difficulties and could never read aloud or speak fluently but could speak ok most of time my difficulties were not noticeable unless i was really tired. I was able to live normal life, work, university etc.
At age 33 i started having difficulties again and my balance and co-ordination difficulties again became more obvious and so did my speech. The doctors were looking for something new that had come on suddenly. (I dont know if the term cerebral palsy existed in 1969 when i was born) They thought I had MS but a scan came back clear. I was told i had symptoms of Cerebellar Ataxia, which can be caused by Hypothroidism, but then the scan of cerebellum came back clear so was told that it was not possible. I was convinced it was connected to my thyroid and eventually they did full bloods testing and found my T3 was dangerously low and TSH (thyroid stimulating hormone) was sky high, as my thyroid couldnt respond to make more (i have had to take thyroxine tabs since 23 months old). After they got my thyroid levels right some of the neurological symptoms went that had caused them to think it was MS (fizzy legs, sight disturbances etc). However by this time i needed a wheelchair and was really struggling with my speech, i thought it would go back to how it had been before..mild difficulties that were barely noticeable unless tired.
It didnt and although i can walk a bit better now i can still only walk for few steps at a time and my muscles tire quickly. i have to have something to hold onto to help me balance and my leg muscle movements are more jerky (like they were when i was child learning to walk). My speech is so bad i get exhausted from effort of trying to speak and can only speak in up to 4 words sentences on a good day. anymore than that and i cant get all the sounds out and people cant work out what im saying. I had to buy a 'lightwriter' (speaks what you type) second hand to take to doctors etc so i can speak in long sentences to discuss my symptoms etc. I am waiting for powerchair from NHS so i can get outside independantly, into town in taxis etc as i am currently housebound unless someone helps me with pushing chair and communication outdoors.
As i had same symptoms as a child is it possible the toxaemia (blood poisining), lack of oxygen at birth and my thyroid not working could have caused CP in the first place?
And when thyroid stopped working again (for a while) at age 33 could that have caused by symptoms to once again become more noticeable as i was constantly exhausted from thyroid not working. Why hasnt it gone back to as mild as it was before when it was barely noticeable?
I be interested to hear from anyone with experience of ataxia or ataxic CP, whether you are a doctor or a person who has it. As my paedriatician never officially dx me with CP and has since died it doesnt say it on my records so doctors wasted time testing for MS, CA, MND etc when all symptoms from birth seem blindly obvious of CP!
Any help or advice appreciated
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