Cerebral Palsy
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Possible Cerebral Palsy?

emilygreen4emilygreen4 Member Posts: 6 Connected
edited October 20 in Cerebral Palsy

Hi everyone :)

Sorry for the long winded-ness!

I am a 27 year old with muscle issues since birth. Symptoms being stiffness of lower limps (particularly calves) this gets worse in the cold and when tired. I walk on my tippy toes on one side and use my toes for balance which has caused me to grow a bunion on one foot. These things do not get in the way of my day to day life but it does affect me emotionally. I constantly try to walk 'normal' (I have a limp and tend to stick my bottom out making my walk 'duck like')

I have had an MRI after going to a foot and ankle specialist who said I have the symptoms of someone with Cerebral Palsy which in all my life has never been mentioned before - which after hearing I thought - yes! this makes so much sense!

Anyway - the MRI came back with only a slight scarring on my spinal cord - is it possible to have CP so mild it does not show on an MRI scan? Could a small bit of scarring be the root cause of all my issues? I feel like I could be getting worse as I am being less active now out of school ect - so will be getting back to more exercise as I do believe this helps.

If anyone out there has had something similar to myself or have another route I could maybe try I would really appreciate if you could get in touch :)

PS hope everyone is keeping safe

Tagged:

Replies

  • janer1967janer1967 Community champion Posts: 5,199 Disability Gamechanger
    Hi and welcome to the community, we are not able to give out any medical advise as we are not medical experts

    However other members may be able to share their thoughts with you and I will also tag in our C expert who may be able to advise. @Richard_Scope can you assist here

    Also have a look in our CP section I look forward to seeing you around
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,679 Scope community team
    Hi @emilygreen4 and welcome to the community! Unfortunately we aren't medical experts, so I can't offer you any kind of diagnosis.

    However, it is possible to have Cerebral Palsy (CP) and have a clear MRI, especially in milder cases. I have mild spastic CP which affects my legs and left side. I have to wear splints to be able to walk any kind of distance, but what you've described is very similar to how I walk around my house.

    Without splints I walk on my toes with my knees turned in. This is due to the tight muscles in my legs. 

    I have known people to get a diagnosis of CP during adulthood, even in their late 40's, if their case is mild.

    If you did want to look into this further you would have to make a GP appointment. They would refer you to neurology who can make the assessment. 

    Please do let us know how you get on and if you have any other questions. I imagine it's given you a lot to think about.
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
  • chiariedschiarieds Community champion Posts: 5,274 Disability Gamechanger
    Hi @emilygreen4 - Did you have a MRI which included the brain as well as your spine? I ask because 'cerebral' means to do with the brain, or cerebrum, which is where problems arise in Cerebral Palsy. As Chloe says, a MRI will not necessarily show anything, but, if your specialist is attributing your problem solely to some slight 'scarring' of your spinal cord (presumably your lower/base of spine), this might rule CP out.
    As advised, speak to your GP, & see if any conclusions have been made following your MRI. A neurology referral sounds like the way forward. Also consider physiotherapy to show exercise that would help you.
    Please do let us know how you get on. :)
  • Richard_ScopeRichard_Scope Administrator Posts: 2,418 Scope community team
    Hi @emilygreen4
    Great to meet you. As has been mentioned, MRI scans do not always show damage and yet the person can be diagnosed with cerebral palsy. Also, any scarring or damage would have had to have happened to your brain and not your spine. Have you discussed your medical history with your G.P.? Any issues around your birth should have been recorded. I would definitely seek a referral to a neurologist.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • RacheleLeahSilveraRacheleLeahSilvera Member Posts: 41 Connected

    Hi everyone :)

    Sorry for the long winded-ness!

    I am a 27 year old with muscle issues since birth. Symptoms being stiffness of lower limps (particularly calves) this gets worse in the cold and when tired. I walk on my tippy toes on one side and use my toes for balance which has caused me to grow a bunion on one foot. These things do not get in the way of my day to day life but it does affect me emotionally. I constantly try to walk 'normal' (I have a limp and tend to stick my bottom out making my walk 'duck like')

    I have had an MRI after going to a foot and ankle specialist who said I have the symptoms of someone with Cerebral Palsy which in all my life has never been mentioned before - which after hearing I thought - yes! this makes so much sense!

    Anyway - the MRI came back with only a slight scarring on my spinal cord - is it possible to have CP so mild it does not show on an MRI scan? Could a small bit of scarring be the root cause of all my issues? I feel like I could be getting worse as I am being less active now out of school ect - so will be getting back to more exercise as I do believe this helps.

    If anyone out there has had something similar to myself or have another route I could maybe try I would really appreciate if you could get in touch :)

    PS hope everyone is keeping safe

    @emilygreen4
    Hello, I since the age of 8 have been told that all of my undiagnosed issues look identical to those with mild CP but because all my previous tests came back clear health professionals have ruled it out. I am almost 18 and frustrated as I know that I have the condition but my views are not being considered.
  • mike62mike62 Member Posts: 34 Courageous
    Hi @emilygreen4
    It took me longer to walk than normal and doctors noticed my left leg turned inwards when crawling. It was later measured as been 15mm shorter than the right leg and when I did walk I couldn't put my left heel down.
    I didn't know I had infant hemiplegic c.p until in my 50s or maybe I was told as a kid but forgot about it. This gave me drop foot, limp and I have to think about keeping my foot straight to avoid tripping. 
    Anyway I'll tell you what happened.  they cut down the back of my leg and extended a tendon ( or something like that) so I could get my heel down.
    I bought a 15mm innersole and put then in wider fitting shoes to reduce limping as much.
    I posted some details under afo orthotics @mike62 if you want to read it.
    Recently I bought a pair walking poles these feel better then one walking stick by giving more level support.
    Excuse my waffle but maybe it can give you some ideas. I wonder if nhs can do something to lower your heels a bit or insoles from podiatrist. I'm happy to give you more info. 
  • chiariedschiarieds Community champion Posts: 5,274 Disability Gamechanger
    The surgery you mention @mike 62 is probably an achilles tendon lengthening, which enables a person to put their heel down. A long time ago, working as a physio, I used to have monthly clinics with an orthopedic surgeon, & recommended this surgery might be helpful in some of the young cerebral palsy children I worked with.
    Thank you for your input, & I'm sorry you didn't have this surgery at a younger age. However, I don't know if @RacheleLeahSilvera (who has replied on emilygreen's post, whose problems seem unlikely due to CP) has a problem with this, as she hasn't mentioned what difficulty she has that might be related to CP.
  • RacheleLeahSilveraRacheleLeahSilvera Member Posts: 41 Connected
    edited November 11
    chiarieds said:
    The surgery you mention @mike 62 is probably an achilles tendon lengthening, which enables a person to put their heel down. A long time ago, working as a physio, I used to have monthly clinics with an orthopedic surgeon, & recommended this surgery might be helpful in some of the young cerebral palsy children I worked with.
    Thank you for your input, & I'm sorry you didn't have this surgery at a younger age. However, I don't know if @RacheleLeahSilvera (who has replied on emilygreen's post, whose problems seem unlikely due to CP) has a problem with this, as she hasn't mentioned what difficulty she has that might be related to CP.
    @chiarieds
    Hello I didn't mention my specific issues in my comment above as I have quite a few and I don't feel that it was necessary for me to do so. If you want to know I will PM you. I would appreciate it if you didn't start coming to your own conclusions of what I may or may not have as you know nothing about me and the challenges that I face on a daily basis.
  • chiariedschiarieds Community champion Posts: 5,274 Disability Gamechanger
    My apologies if I inadvertently came across wrongly @RacheleLeahSilvera - of course I don't know about your specific issues, & no need to mention them. I didn't feel I'd stated any conclusion of what you may have/have not, I just said I didn't know if you had an issue similar to the one mike62 mentioned, as you hadn't said what difficulty you had that might be related to CP. Please read my post again, & don't take offense where absolutely none was intended.
  • mike62mike62 Member Posts: 34 Courageous
    Thanks @chiarieds for the tendon info. 
  • mike62mike62 Member Posts: 34 Courageous
    Hi @RacheleLeahSilvera I feel for you in what you wrote about "about getting on with things and sometimes affects you emotionally having to concentrate on walking better". 
    I kinda got away lightly until reaching late 50's then had to concentrate on not tripping up which I did a few times, some at work which made me angry and embarrassed and hurt myself. So now I walk a bit slower with limited shoe range with insoles from podiatrist also I bought a pair of walking poles for walks in park which helps a lot.
    Take care.
  • chiariedschiarieds Community champion Posts: 5,274 Disability Gamechanger
    Hi @mike62 - it was the original poster, emilygreen4, who said her issues had affected her emotionally, & she tried to walk 'normally.' Also it seems unlikely from what she's said that she has cerebral palsy, tho it seems she has a neurological problem, if you read Richard_Scope's reply, & my own last month (this because Emily mentioned only 'scarring' on her spine).
    RachelLeahSilvera commented yesterday on Emily's post saying, ' since the age of 8 have been told that all of my undiagnosed issues look identical to those with mild CP but because all my previous tests came back clear health professionals have ruled it out..... '
    I worked with children with cerebral palsy, as that was what I'd decided I wanted to do before qualifying as a physio. I have maintained an interest in neurological problems throughout my life, but cerebral palsy is why Scope matters to me so much.
    My son also has had achilles tendon lengthening + a bit more, as he was born with both feet turned inwards (bilateral talipes, or club feet).
    I commented yesterday evening, as I didn't know what problems RachelLeahSilvera had, as she hadn't mentioned these, or if she had a problem similar to yours. Unfortunately this seemed to cause her some unintended upset.
    Anyway, I'm sorry, as I said, that you didn't have surgery much earlier, as I know from my son, if this is done as a child (he was 14 months old when he had his surgeries), you forget. Not knowing what you had until an adult, must understandably have made you both frustrated & upset. Your insight, & how you've worked out to help yourself is appreciated. When I worked with young children I was hoping to help them 'then' to the best of my ability. I didn't think/consider what problems they might have as adults; being on Scope helps me understand this a little better, as does your reply.

  • mike62mike62 Member Posts: 34 Courageous
    Hi @chiarieds just read my post and my text was misleading. I didn't state I was about 3 to 5 years old when the operated on my leg, not sure though.
    I can just about remember the doctor pushing my leg up and down. My mother would say walk straight....walk staight often when walking with her.
Sign in or join us to comment.