Cerebral Palsy
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Can you have CP and not know and can it be diagnosed in your 30s?

Phil82Phil82 Member Posts: 50 Connected

Hi

I'm new here and looking for some advice after reading a lot about Hypertonia and Rigid muscles.

Ever since I was a teenager I have struggled with tight muscles and short muscles the physio at the time said it was like my muscles had stopped growing at about the age of 13/14. I had lots of Physio, stretching and got some orthotics especially because I have a high arched foot inherited from my mum. This type of helped during my growing phase then I stopped and just got on with it through my 20's. Although I was always aware I had tight muscles and high muscle tone esp my calfs and quads but was always told this was them compensating for my biomechanical issue.

Fast forward to my early 30's and I noticed the tightness getting worse, back pain, neck paid and now arms and hands, a lot can be down bad to bad posture with having an office job and Repetative strain injury but most days I ache.

I'm also extremley heavy footed and always have been and seem to but a lot of pressure on my heel/ankle when I walk, I walk the heel down on my shoes rediciously quick and if anything this is getting worse I am always needing to buy new shoes and can walk the heel down in a matter of weeks.

As my aches and pains are getting worse I went to the Dr's who at first said there was nothing wrong with me as all my muscles are strong and I have good reflexes. Reluctantly they sent me to a NHS physio who said there must be some other underlying issue like a neurological condition as it like my muscles are switched on constantly and don't relax (even though I think I'm relaxed).

I have been reading a lot about Hypertonia and rigid muscles and this would explain why I have massive tight calfs and quads and also poor ankle flexibility which leads to a whole host of other issues up the chain tight hips, funny walking gait, back pain etc which sums me up perfectly.

However I have no underlying health issues and as far as I know no complications as a child apart from a bit of a funny gait when I ran at football age 7 and then the muscles stopping growing at 13.

So can you have CP and not know about it?

Any advice would be greatley received

Replies

  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    Hi @Phil82
    Good to meet you and thanks for your post.
    It is possible to have CP and not know about it, especially if it very mild. The oldest person I have spoken to with a recent diagnosis is 59. 

    When you were a child did see a paediatrician?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Phil82Phil82 Member Posts: 50 Connected

    No I have never seen anyone apart from a private physio as a teenager and was always relctant to go as they would just say it was growing pains. I have mentioned tight muscles to the dr's in passing before and they just tell me to go swimming and stretch even 2 weeks ago the dr said you just need to do more stretching, I stretch 3 x a day!

    During primary school I think I was quite normal and I don't think my flexibility was to bad my mum used to have me at dance classes and gymnastics! it wasn't until I became a lazy tennager that things set in. I guess I stopped using the muscles as much so they tightened up I find now if I don't excercise I start to tighten up pretty quick.

  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    Keeping as active as you can is a good way to keep the muscles supple. Swimming is good because it is zero impact, giving you an opportunity to excercise your joints without impact stress.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Phil82Phil82 Member Posts: 50 Connected

    I was doing a lot of running over the lat 6 months and was really pushing it and that's when more strange niggles have set in leading me to ask more questions.

    Looks like my running days might be numbered.

    I swim, cycle, do pilates and other strength based excercises/weights not sure about the cycling either as that tens to tighten up my hips.



  • LaughingLollyLaughingLolly Member Posts: 101 Pioneering
    Thanks for this discussion. I've been wondering about a similar issue 
    A laugh a day keeps the psychiatrist at bay. 
  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    Hi @Phil82
    Perhaps it might be a case of you doing too much? I have always believed that CP is a balancing act. Doing enough to keep you mobile and as healthy as possible whilst listening to your body and not doing too much which can lead to physical breakdown
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Phil82Phil82 Member Posts: 50 Connected

    Quick update I went to Rheumatology today who also has no idea what's wrong with me, although she thought it was more muscular than joint related, however they are sending me for electric muscle stimulation tests to see how the muscles are responding to the nerves.

    Has anyone else been for these tests and if so was it these tests that led to a diagnosis or is this just the first step and are there are lots more tests to come.  

    Will probably be 2/3 months before I go so will be sometime before I find out anymore.

  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    Hi @Phil82
    I haven't had electric muscle stimulation tests, my CP was always obvious. At a guess, the test would be used as part of a diagnostic process. There is no one test that is used to identify CP. It is usually many test procedures and observation over a period of time especially when the CP is very mild.
    Keep in touch.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Phil82Phil82 Member Posts: 50 Connected

    Thanks Richard

    I have also just read your post imparement thread very interesting and would explain why I think I have biomechanical/joint issues but others think the main cause is something else, maybe my poor ankle flexibilty and walking gait is a post imparement sympton and not the primary cause.


     

  • StayceStayce Member Posts: 398 Pioneering
    Hi @Phil82

    I have had electrical muscle tests - for trapped nerve not to diagnose CP, I don’t believe it’s used to diagnose CP.

    EMS can be used to build up weak muscles associated with CP as part of physio treatment

    Main diagnostic tests for CP are brain MRI scan, gait analysis and observations as @Richard_Scope mentions

    Hope that helps

    Best


  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    Hi @Stayce
    How have you been?

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • StayceStayce Member Posts: 398 Pioneering
    edited May 2019


    Thanks for asking @Richard_Scope

    I’m plodding along recovering from stress fracture in leg, with some secondary issues for added value,😀 long recovery...

    How are you?

    Tag me into any discussions you think I could help with

    Best

    Stayce
  • Phil82Phil82 Member Posts: 50 Connected

      Thanks Stayce

    I'm convinced I will remain a medical mystery

    All my tightness does seem to come from where the main nerves are which is why they will want to see what's hapening between the nerve and the muscle.

    I've tried some of these nerve flossing excercises and everyone seem to hit the exact spots where I have problems.

    I think I just need an MRI scan to get the bottom of everything and an Osteopath told me I need a CT scan due to my stiff neck but you seem to have to go through lots of other procedures first.



     

  • StayceStayce Member Posts: 398 Pioneering
    Hi @Phil82

    You are right -there does seem to be a lot of procedures to go through with these things 

    I hope you get to the bottom of your symptoms. Let us know how you get on with the EMS tests

    Best


  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    Stayce said:


    Thanks for asking @Richard_Scope

    I’m plodding along recovering from stress fracture in leg, with some secondary issues for added value,😀 long recovery...

    How are you?

    Tag me into any discussions you think I could help with

    Best

    Stayce
    Hi @Stayce
    I'm okay thanks. Sorry to read about your leg, don't you just love secondary issues? Of course, I will tag you in. It's great to have your input :)
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Phil82Phil82 Member Posts: 50 Connected

    So I had my EMS/nerve conduction tests today and they said everything was fine where I was 100% sure that it would show that even when resting my muscles were switched on.

    Not sure where my investigations will go now if anywhere as worried I might have hit a dead end.  

    But as someone said above these tests don't show CP anyway do they?

    Maybe I just need to keep pushing for an MRI scan I'm sure a full scan is the only way to get the bottom of the issue or at least rule everything out.

    I finally have a GP appointment tomorrow after 8 weeks of waiting! mainly to discuss the secondary issues so see if we have any luck but I doubt it.


  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    Hi @Phil82
    That is incredibly frustrating for you. EMS/nerve conduction tests would not diagnose CP. There isn't one test that will. A brain scan can often assist with identifying areas of brain damage but not in every case. There is no stand-alone test for cerebral palsy, diagnosis is more of a process that looks at evidence from different sources (such as medical history, general tests, scans and observation).
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Phil82Phil82 Member Posts: 50 Connected

    Thanks Richard

    but if a person with CP who had high muscle tone went for a EMS/test would some type of activity show up at least?

    Intrestingly my Rheumatoligst and Osteopath have definetley observed issues with walking gait's, speach, facial expressions, muscle tremors.

    Not sure if I mentioned but I just found out when I was a kid I had something called Henoch Schonlein Purpura and all my legs stiffened up for a week, apparently this virus can in rare cases can cause swelling round the brain and enter your central nervous system a bit like Meningitis.

    The consultant doesn't know about my HSP history yet as I only found it myself by asking for my Dr's surgery to dig out my notes from 30 years ago! I'm not sure if my GP even knows yet until I go and see them tomorrow.

  • April2018momApril2018mom Posts: 2,869 Member
    Phil82 said:

    Thanks Richard

    but if a person with CP who had high muscle tone went for a EMS/test would some type of activity show up at least?

    Intrestingly my Rheumatoligst and Osteopath have definetley observed issues with walking gait's, speach, facial expressions, muscle tremors.

    Not sure if I mentioned but I just found out when I was a kid I had something called Henoch Schonlein Purpura and all my legs stiffened up for a week, apparently this virus can in rare cases can cause swelling round the brain and enter your central nervous system a bit like Meningitis.

    The consultant doesn't know about my HSP history yet as I only found it myself by asking for my Dr's surgery to dig out my notes from 30 years ago! I'm not sure if my GP even knows yet until I go and see them tomorrow.

    What did the consultant say?
  • Phil82Phil82 Member Posts: 50 Connected

    I haven't heard back for the consultant yet I'm in limbo at the moment while they wait for the write up from the nerve tests and decide what to do with me.

    The GP was no use at all they said anything I need now has to come through the hospital and not the GP (basically they don't want me on their budget) the thing is if I get refered straight onto Neurology it could be months before I see anyone.

    The GP also didn't know if the HSP could affect the nervous system, she basically googled it and said probably not but look it up yourself.

    My next plan of attack is to take my little lad to the GP later this week to ask them about his tight muscles especially in his hands and why his left calf is so tight it's making his foot point out (his foot position is actually worse than mine). It's as if we both have something that is either making our left calf extra tight or we have short ligaments/tendons down the left both of which would create stiff ankles. 


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