Hi, my name is Bob_! I suspect the problems in my left leg could be undiagnosed CP — Scope | Disability forum
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Hi, my name is Bob_! I suspect the problems in my left leg could be undiagnosed CP

Bob_
Bob_ Member Posts: 10 Listener
edited July 2021 in Cerebral palsy
.
I'm new here.  At 58 y/o, I'm looking around, reading up on support: 
I suspect life-long problems I've had with my left leg could be undiagnosed CP.  I'm willing to find out, having stumbled on or up pavements no less than five times yesterday :).  I suspect people think I'm drunk. 

Comments

  • janer1967
    janer1967 Member Posts: 16,407 Disability Gamechanger
    Hi and welcome to the community Feel free to join in or ask any questions 
  • Tori_Scope
    Tori_Scope Posts: 9,644 Scope online community team
    Welcome to the community @bob_ :) Thanks for joining. 

    I'm sorry to hear about your stumbles. Have you started off the process by going to visit your GP? Or taken any other steps?

    Please do feel free to take a look around the community, and let us know if you need anything. You can view all of our categories of discussion here. In particular, you may be interested in our category dedicated to discussions on cerebral palsy.
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  • Bob_
    Bob_ Member Posts: 10 Listener
    edited July 2021
    Thanks, Teri.  I tried the GP route over the severe tendonitis this Feb when it was really bad, and was met by a) terrible lack of knowledge of something relatively common - she had to look up how to assess it :o ; b) severe attitude problem - incredibly dismissive, i.e. 'take ibuprofen' for some [undefined] time.  I knew more than she did.  It's not like I go to the doc often.  I'd rather pursue other routes for diagnosis - if they exist.  All ideas welcome. Please keep them coming.  And thanks again, Teri.
  • Ross_Scope
    Ross_Scope Posts: 7,485 Scope online community team
    Hello @bob_ and welcome to the community. Sorry to hear your GP wasn't very helpful in that situation, you could always ask for a referral to a new GP in the hope that they can be of greater help to you?
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  • Bob_
    Bob_ Member Posts: 10 Listener
    edited July 2021
    Thank you, Ross.  Suggestion appreciated.
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,478 Disability Gamechanger
    Hi @Bob_ - welcome to the community, & thank you for joining. I'm sorry about your GP.....one of the best consultants I ever met said, 'I don't know, but I will find out,' but that was over a far more complex issue. To have a GP with such a lack of understanding, & then being dismissive certainly doesn't seem good at all. As Ross suggests, try another GP, one willing to listen to your concerns. Also our Cerebral Palsy Specialist Information Officer may be able to help with appropriate advice with voicing these concerns to a GP. Please @Richard_Scope would you advise here, thank you.
  • Richard_Scope
    Richard_Scope Posts: 3,176 Scope online community team
    Hi @Bob_
    The first place you should go for a diagnosis is your G.P. You are entitled to a second opinion.

    Have you ever seen your medical records at all? That would also provide you with some good insight.

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Golden12
    Golden12 Member Posts: 15 Connected
    hi bob I went to my GP first then was prescribed Pain medication for year I think then last resort was the G.P ?referred me to the Rhemotolgy at the local hospital, I then had a MRI X-ray this confirmed I had a prolapsed disk, so had a weak left leg as the pain was radiating down leg   tnormally sort itself but mine was far gone  but mine took years then my  health deterated to other health issues Years went by not knowing until 2012 I was dignosed with MS Thank God ? at least i'm here main thing ,no one can tell you but this is what i think take care god bless.
  • Bob_
    Bob_ Member Posts: 10 Listener
    Thank you to everyone who's replied.  I've now had a couple of goes at trying to get an appointment with my GP, but after they were so dismissive of my very painful tendonitis in February (arms, hands, legs), not sure whether it'll go anywhere.  Any further comments, suggestions, and own experiences welcome.
  • Bob_
    Bob_ Member Posts: 10 Listener
    edited July 2021
    Bob_ said:
    .
    I'm new here.  At 58 y/o, I'm looking around, reading up on support: 
    I suspect life-long problems I've had with my left leg could be undiagnosed CP.  I'm willing to find out, having stumbled on or up pavements no less than five times yesterday :).  I suspect people think I'm drunk. 

    Thank you to everyone who commented on my posted a few weeks ago about my left foot and the possibility I have undiagnosed CP.

    • After several false-starts, I met with my GP face-to-face on Mon.  He was puzzled about what I'd said concerning my left leg/foot.  But he didn't dismiss it.  Many short exercises in his consulting room later, he gave me an exercise of seeming to walk along a straight line heel-to-toe like a tightrope walker.  And I failed badly.  I could barely stand up after just three, and toppled over.  I'm not disappointed.  It proved the point.  I haven't imagined my left foot dragging lately, etc, missing steps, some bad balance, coordination, etc.  And what with my left foot being not able to coordnate itself for swimming breaststroke 'whip-kicks', I feel after 58 years I'm getting somewhere.
    • However, my GP doesn't think I have CP.  I'm not ruling it out, as my left foot doesn't work particularly well, and my left leg muscle are too tight - crossing my left leg over my right is painful, but not right over left.
    • My GP thinks I might have cerebellum damage from birth.  But here's a thing:  I live in London, so you'd think choice was good.  He's not too sure which hospital or department to start me with re' diagnosis.  Does the same hospital dept that diagnoses CP assess cerebellum damage?  I don't know enough and can't find enough online.  Don't get me wrong, he was professional throughout.  He's about my age and said he'd do some research and let me know.  It sounds like I'm the first patient he's met with this condition.  Does anyone know of an appropriate hospital in/around London and department name to get me started with diagnosis - perhaps one that's a bit more specialist?  Or perhaps a body I can phone to get me started?
    Does it make sense that I was pleased with the consultation and that a surprise tightrope exercise made me topple over?  I haven't imagined this problem since earliest memories.  Thank you all for previous support and reading this update.

    Regards, Bob


  • Richard_Scope
    Richard_Scope Posts: 3,176 Scope online community team
    As the G.P. is around the same age as you @Bob_, I'd be astounded if he'd never encountered CP before, even in its mildest presentation. CP is the most common physical/neurological impairment in the western world. There are approximately 17 million of us out there.
    Ask your doctor to refer you to National Hospital for Neurology and Neurosurgery : University College London Hospitals NHS Foundation Trust (uclh.nhs.uk) 
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Bob_
    Bob_ Member Posts: 10 Listener
    As the G.P. is around the same age as you @Bob_, I'd be astounded if he'd never encountered CP before, even in its mildest presentation. CP is the most common physical/neurological impairment in the western world. There are approximately 17 million of us out there.
    Ask your doctor to refer you to National Hospital for Neurology and Neurosurgery : University College London Hospitals NHS Foundation Trust (uclh.nhs.uk) 
    Thank you, Richard.  I think it's the fact my GP thinks it's not CP that's the issue.  He says he thinks I have damage to my cerebellum, but that it's not CP.  I'm open to suggestions.  But, so far he can't explain my left foot issues (slight dragging and tripping; I can be unsteady on my feet/swagger; and I can't 'whip-kick' with my left foot when I do breaststroke, but I can with my right; and my left leg has tight muscles where the right doesn't).  Thank you for the recommendation.  That's exactly what I need, as he seemed genuinely stuck on whom to refer me to. 

    Thank you again, as I wouldn't have got this far if I hadn't first started with this discussion.
  • Richard_Scope
    Richard_Scope Posts: 3,176 Scope online community team
    Damage to the cerebellum can cause a type of CP. What is the movement range and dexterity like in your left arm/hand?
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • Bob_
    Bob_ Member Posts: 10 Listener
    Damage to the cerebellum can cause a type of CP. What is the movement range and dexterity like in your left arm/hand?
    Movement in my left arm and hand is good, thank you.  So, if it's damage to my cerebellum, it's affecting  just my leg. 
    • I will say, having done a little research since I saw my GP, I read that speech issues can also be down to damage to the cerebellum.  And I can't count the number of times speech gets stuck, or speech tumbles out uncontrolled.  On the whole speech is okay, but I particularly struggle with it when i'm tired.  And it embarrasses me a lot, and I don't have much confidence some times, knowing it could betray me.  I used to notice it a lot when I did occasional presentation work.  When I'm fine, you wouldn't think anything was wrong.  I was focusing purely on limb movement when I was with my GP on Friday.  I will mention the speech thing to my GP, as I've left a message for him to call me to chat further.
    • Earlier this year, I suffered terrible tendonitis, I saw a doctor other than the GP who's seeing me over the possible cerebellum issue.  The tendonitis affected both arms, and I've had hamstring problems since, with my left leg feeling a bit weak.  Yet, my normal GP didn't refer to the tendonitis once when i saw him the other day when we discussed potential cerebellum issues.  It must be in my notes.
    Any other points, or ideas, or direction gratefully received.  As I said earlier, I wouldn't have got this far with my GP if I hadn't joined this community.  Thank you.
  • Bob_
    Bob_ Member Posts: 10 Listener
    Just a short update:  After the support here two months ago, I saw my GP.  He could see one of the issues I have, though in the physical space of a small surgery it wasn't so easy.  But it was start.  A hospital referral has come through.  So, after 58 years, I'm looking forward to seeing what they say.  Thanks again for the support.
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,478 Disability Gamechanger
    Thank you for the update @Bob_  - & I hope you get some conclusive answers. :)

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