Cerebral Palsy
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lozzer25lozzer25 Member Posts: 89 Courageous
Have recently started working things were going well up until yesterday my left leg has started dragging across the floor again it's so embarrassing tried all the exercises my physio gave me and even had a radox bath nothing is helping any advice would be much appreciated 

Replies

  • Richard_ScopeRichard_Scope Posts: 2,830

    Scope community team

    Hi @lozzer25
    Glad to hear that your job is going well but not so glad to hear about your leg. Are you experiencing pain in that leg? 
    I use Epsom salts in my baths as they are high in magnesium. Also, try elevating that particular leg on a pillow while in bed or on the couch.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • lozzer25lozzer25 Member Posts: 89 Courageous
    Thank you richard its my weak leg again the weak one has got to the point were it is dragging so I have to elevate my foot to walk on my tiptoes I've tried a radox bath done my exercises elevated it nothing works but because I'm up on my left the right leg is starting to hurt 
  • lozzer25lozzer25 Member Posts: 89 Courageous
    I sleep with my left leg bent in bed my legs don't like being straight 
  • Richard_ScopeRichard_Scope Posts: 2,830

    Scope community team

    Have you considered a sports massage? I have had them before and they do help.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • lozzer25lozzer25 Member Posts: 89 Courageous
    My dad is a sports therapist massages don't do anything I've had to ring the doctors to see if I can temporarily increase my baclofen like I had to do last time it happened it's so embarrassing it frustrates me I hate it 
  • Richard_ScopeRichard_Scope Posts: 2,830

    Scope community team

    I can empathise with your frustration, I really can. Does occur more towards the end of your working day?
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • lozzer25lozzer25 Member Posts: 89 Courageous
    No it started on Tuesday all of a sudden on my day off just wish it would **** off I've been working on adrenaline if that makes sense when I'm at work and I think it's just ran out 
  • Richard_ScopeRichard_Scope Posts: 2,830

    Scope community team

    Working on adrenaline makes perfect sense to me. Are you worried or stressed about anything (apart from your leg)? The reason I ask is when I'm stressed or not sleeping too well my body works even worse than normal.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • lozzer25lozzer25 Member Posts: 89 Courageous
    No I'm not stressed I've been the positive I've been in a long time I don't sleep very well as I can never find comfort due to tightness when I do finally go to sleep a spasm normally wakes me up 
  • Richard_ScopeRichard_Scope Posts: 2,830

    Scope community team

    Hi @lozzer25
    How are you today? Have you increased the Baclofen? I wonder if @Stayce has any ideas that could help.

    Scope
    Specialist Information Officer - Cerebral Palsy

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  • LindaButler1970LindaButler1970 Member Posts: 40 Courageous
    Hi, my right leg drags and I have foot drop all the time, what does help is my leg brace which I wear, its not a cure but helps a bit! 
  • StayceStayce Member Posts: 455 Pioneering
    edited June 2019
    Hi @lozzer25
     

    Welcome

    Thanks @Richard_Scope for tagging me into this discussion. I too find stress affects my muscle tone too. 

    Do you have a leg brace as @LindaButler1970  suggests it help a bit. I would definitely talk to your orthotist about any further adjustments that they could make to your brace to improve pain if you have one or asking your GP to refer you to orthotics if you are not currently seeing an orthotist

    I use this over a Lycra splint when mine is having a bad day, as it were. I’m not suggesting you buy it as I got mine on the NHS but it might be something to discuss with your orthotist as it can be worn with other orthotics and works to lift the foot

    http://www.beagleorthopaedic.com/products/foot-and-ankle/neurodyn-plus-foot-lift-orthosis

    Another option is a SAFO
    @LindaButler1970 what sort of brace do you have?

    I would also recommend that you see your GP or physio to make enquires about hydrotherapy in your area, particularly if you are not finding benefits from things like massage.

    Hope this helps

    Best


  • lozzer25lozzer25 Member Posts: 89 Courageous
    I don't have a leg brace it seems to be righteninģ itself finally I didn't increase the baclofen only thing orthotics give me was a heel elevator and that was no use xx could what I getting be foot drop what causes it
  • lozzer25lozzer25 Member Posts: 89 Courageous
    Feels like a current is running through my leg all the time like electric 
  • Richard_ScopeRichard_Scope Posts: 2,830

    Scope community team

    Do you have sciatica @lozzer25

    Scope
    Specialist Information Officer - Cerebral Palsy

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  • lozzer25lozzer25 Member Posts: 89 Courageous
  • Richard_ScopeRichard_Scope Posts: 2,830

    Scope community team

    How are you today @lozzer25

    Scope
    Specialist Information Officer - Cerebral Palsy

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  • StayceStayce Member Posts: 455 Pioneering
    Yes how are you @lozzer25

    Perhaps you have nerve entrapment or nerve irritation, people with CP can be very susceptible to nerve entrapments due to our tight muscles. Best to check this out with either a physio or osteopath. If you are not currently under one then speak to your GP to get you referred. Best to get these things checked out, especially if it’s still problematic

    Best
  • lozzer25lozzer25 Member Posts: 89 Courageous
    I'm going to be leaving this site soon as I have just received my mri results which have come back normal so I mustn't have cerebral palsy must all be in my head thanks for all your help over the years 
  • Richard_ScopeRichard_Scope Posts: 2,830

    Scope community team

    @lozzer25 you don't have to leave the community. What was the actually said to you about the MRI results? An MRI scan can often assist with identifying areas of brain damage but not in every case. There is no stand-alone test for cerebral palsy,

    Scope
    Specialist Information Officer - Cerebral Palsy

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  • lozzer25lozzer25 Member Posts: 89 Courageous
    Just said mri was normal nothing else another letter to leave me in limbo I feel like I've bitching and griping about nothing over the years as there is nothing wrong with my brain now I have to wean myself off baclofen which I've been taken for 6 years x
  • Richard_ScopeRichard_Scope Posts: 2,830

    Scope community team

    You are a valued member of our community and I don't think you have been griping over nothing. Your symptoms have a very real effect on your day to day life. It may or may not be CP but the medical professionals still have a duty to try to find a diagnosis for you. We will be here to support you as and when you need.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • lozzer25lozzer25 Member Posts: 89 Courageous
    Thank you richard x
  • Richard_ScopeRichard_Scope Posts: 2,830

    Scope community team

    :)
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @lozzer25, like @Richard_Scope has said, there is no true MRI pattern to confirm cerebral palsy. This means that people can have a clear MRI scan and still have CP. Your symptoms are not in your head and you are a very valuable part of the community. Has the Baclofen been helping your symptoms. I really would seek medical advice about how to come off it if this is what you choose to do.
    Scope

  • lozzer25lozzer25 Member Posts: 89 Courageous
    Yes it has its give me the mobility back in my hands and my tremors are only a small dither before started baclofen I couldn't carry cup before with my hands as they would shake having spasms when I try to cut vegetables up, I still get them now but there 99% better than what they were the baclofen has really helped me there I will seek advice from a doctor about the baclofen just wish I had a definitive answer to what is wrong yes or no that is all I want to know xx
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    I'm really glad the baclofen has been able to help you so much! I know a definitive answer is what you wanted and I can definitely relate to this with my own experiences. Are you due any other appointments which might allow you to get answers?
    Scope

  • lozzer25lozzer25 Member Posts: 89 Courageous
    No I have asked the receptionist to ask the neurologist to write a detailed report of what the findings were x
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    I hope you are not waiting too long for this then :)
    Scope

  • lozzer25lozzer25 Member Posts: 89 Courageous
    Thank you Chloe I don't believe it's physcosomatic i have had the symptoms since being a little girl xx
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    No problem at all :)
    Scope

  • Richard_ScopeRichard_Scope Posts: 2,830

    Scope community team

    edited June 2019
    lozzer25 said:
    Yes it has its give me the mobility back in my hands and my tremors are only a small dither before started baclofen I couldn't carry cup before with my hands as they would shake having spasms when I try to cut vegetables up, I still get them now but there 99% better than what they were the baclofen has really helped me there I will seek advice from a doctor about the baclofen just wish I had a definitive answer to what is wrong yes or no that is all I want to know xx
    Good morning @lozzer25
    How are things today? 
    I thought about what you posted above and it reminded me of another member that I have working with over the last month. They have been trying to help their son get a diagnosis of CP for the last 5 years. He has eventually been diagnosed with FND (Functional Neurological Disorder). FND, sometimes referred to as Functional Movement Disorder as well, presents similarly to a lot of other impairments such as CP and as a result can be very difficult to diagnose. Here is some information about it: Neurosymptoms.org
    I'm not medically trained, so please discuss this with your G.P. and consultant. I hope you get answers soon.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • lozzer25lozzer25 Member Posts: 89 Courageous
    Thank you richard x
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