Cerebral Palsy
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Need some advice.

katy94katy94 Member Posts: 7 Listener
Hello again school community, you were so helpful last time when I came to you all needing advice. So I thought I’d come to you all again and see if you could help me. 
As you might remember I am suffering with cerebral palsy which I’ve had since birth. For the past 10 years I’ve been going to the doctors about various problems which I believe are related to my CP, I keep getting fobbed off with  different medications which I believe they are using to try and treat the symptoms but not really explore the cause.
since giving birth to my daughter two years ago I believe that my symptoms of CP have worsened and I’ve been really struggling recently to manage looking after myself and my daughter. i’ve been struggling with chronic pain and extreme exhaustion. I go to bed with terrible cramps in my muscles and wake up with terrible cramps in my muscles. I’ve also been suffering with insomnia. i’m not able to be as active as I used to be and I find the simplest things overwhelming my body. my doctors have given me iron tablets, tried to put me on antidepressants, told me to take paracetamol four times a day and then finally after 10 years of pushing they put me on amitriptyline. they also promised me that I have an appointment with a specialist in neurology. The amitriptyline was working well and I was looking forward to seeing the specialist when I received a letter telling me that they wanted me to come off my amitriptyline and that I did not need to see a specialist as they put my symptoms down to me having acute migraines. I mean I think it’s a bit ridiculous really I’ve had cerebral palsy since birth and all my symptoms seem to relate to that. never once have I complained of a headache,  my only complaint was that when my body was extremely fatigued and I was becoming really exhausted that my vision was a bit blurry at times but that to me doesn’t really seem like a migraine. So I came off the amitriptyline and started to take the new medication they had offered me pregabalin. After taking just one dose and Tuesday night I woke up Wednesday morning unable to move or speak the whole left side of my body wasn’t working, my face was drooping  and I couldn’t smile. My partner thought I was having a stroke I didn’t even know what was going on. I managed to call the doctor but couldn’t get my words out so she’s all my partner to call 999, I went to hospital in an ambulance and I was so worried what was happening because I genuinely had no idea. I was given blood tests and a CT scan and eventually came around later that day. I was told I was well enough to go home my scan was clear and they had no idea what was wrong with me the only exclamation could be that had a bad reaction to the pre-Gabalin. I then phoned my doctor back to explain what is happened and she told me to go back on the amitriptyline. There is still no sign of me seeing a specialist or getting any kind of physio or any other help for that matter really. So if anyone has and any advice on how to take this forward and if there’s any way I can get help to go see a specialist I would be most grateful. I’m a 26-year-old mum of a two-year-old I was really struggling at the moment and my doctors just don’t seem to want to know. Thanks for listening. 

Replies

  • Ross_ScopeRoss_Scope Posts: 4,131

    Scope community team

    Hello @Katie94

    Good to see you back on the community, but I'm sorry that you've been struggling lately and haven't received the help you believe you need. 

    It's hard to advise on how you might go about getting an appointment with a specialist if your GP doesn't feel you need one. Have you considered being referred to a new GP in the hope that they take a different view of the situation?
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  • janer1967janer1967 Member Posts: 11,199 Disability Gamechanger
    @Richard_Scope can you offer any advice here 
  • CplifeCplife Member Posts: 2 Listener
    Hello Katie94
    I would ask for a second opinion or find a different doctor. I would also be asking why they think you don’t need to see a specialist and what is there knowledge regarding cerebral palsy I totally understand the pain you’re in I’m 51 and have had cerebral palsy since birth. My doctor has referred me for physio I’ve also been diagnosed with osteoarthritis this means I have to different types of pain don’t give up keep on at them unfortunately we have to fight for everything we get it’s so wrong 

  • katy94katy94 Member Posts: 7 Listener
    Has anyone on here had an MRI done through the NHS as like a check up kind of thing? 
  • Richard_ScopeRichard_Scope Posts: 2,838

    Scope community team

    Hi @katy94
    I'm sorry to read that you have been put through so much! First of all, amitriptyline and pregablin are very, very strong medications with some not so pleasant side effects as you probably know. I am surprised that your G.P. went straight to these. Has the G.P. discussed Baclofen with you? This can be used to control the muscle spasms and tightness but again there are side effects. Is you G.P. aware of the Adult CP Care Pathway? You are entitled to ask for a second opinion and if I were you I would also ask for your B12 levels to be checked.
    I have had several MRI scans over the years.
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  • katy94katy94 Member Posts: 7 Listener
    Thank you everyone for all your responses. I will be getting in touch with my GP tomorrow and asking these questions. I have never heard of the CP pathway so will look into it. Thanks again. 
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