Hi, my name is katy94! Has anyone else had other diagnoses as well as CP?
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katy94
Community member Posts: 16 Listener
Hi there scope, my name is Katy and I have left hemi, I’m 26 and had this all my life. I’ve recently had a baby and since found that my problems seem to have worsened. Has anyone on here had any experience with this? I’ve only just found out about scope and I think it’s amazing that I can find people on here who have similar difficulties to me. I haven’t really got anyone I can talk to that can relate. Not even my GP really knows what’s going on with my CP. has anyone else had other diagnoses as well as the CP?
Thanks in advance,
katy.
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katy.
x
Comments
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Hi and welcome to the community
There are lots of members here with same condition have a look in the specialist section
We also have a specialist adviser @Richard_Scope who can ppint you in the right direction
There is also a cp virtual meeting held on some Mondays
Congratulations on your addition to the family -
Thanks so much for your quick response. I’m just trying to muddle through this forum. Where will I find the specialist section?Thanks,
katy.
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Scroll down to bottom of this page to quick links and select all groups and this gives full list of all sections
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Hi @katy94 and welcome to the community! Congratulations on your new bundle of joy! I'm 26 and have a 6 month old daughter, I don't have the same condition as yourself, but I do have Sensory Ataxia (and other conditions) and can relate to what you've said.
Since having my daughter, I've really struggled with my balance and mobility, I personally feel this is due to the excruciating pain I experienced when all the pain medication wore off, along with how most of the nurses didn't listen to me properly when transferring or repositioning me.
Did you see a physiotherapist after having your baby?Disability Gamechanger - 2019 -
Hi @katy94 - welcome to the community from me too, Katy. I have a neurological problem called Chiari 1 Malformation associated with a genetic disorder, so I've also had it all my life.Don't worry about the different sections on here, as Jane has asked Richard_Scope to advise, he will see this & respond. Meanwhile here is a link to the CP cafe where you can meet others with CP: https://forum.scope.org.uk/discussion/73129/our-next-welcome-cafe-is-monday-14th-of-december-4pm-until-5-30pmAnd here's the section Scope has about CP: https://forum.scope.org.uk/categories/physical-impairments-and-cerebral-palsyCongratulations too on the birth of your baby.
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Hi @katy94
Good to have you join us on the community and congratulations on becoming a mum. I have CP too and I'm a dad. What sort of things have you been experiencing?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. -
Hi all, thank you all for your kind responses! My CP was always quite mild, in that my mobility was only slightly impaired, my vision wasn’t great and I was generally able to look after myself. However, since giving birth to my daughter 20 months ago, I seem to be unable to complete my usual daily tasks. My body gets so exhausted from the simplest things. I’m struggling to get up in the morning due to the extreme pain and exhaustion I’m feeling. My labour was very traumatic for me as I gave birth naturally but in the end I was unable to push myself and needed forceps. I’ve been on lots of different medications and my GP has tried to diagnose me with lots of different things. I’ve not been able to sleep properly and my leg seems to be spasaming a lot more than usual which keeps me awake. I’m now on amotriptoline for sleep and pain. It’s working for sleep but not for my pain. Anyway, long story short as I said before, I haven’t had anyone who can really understand until I found this site. I’m going to see a neurological physio therapist hopefully so things may get better for me. But thanks again for all your responses, if anyone wants to talk more I’m always happy to talk.
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It's great that you have an appointment with a neuro-physio, it's a good place to start! Has your G.P checked your vitamin B levels? Or discussed the possibility of Baclofen to help with the spasms? I have also created an advice page about Fatigue and CP that you might find helpful @katy94
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. -
Thanks so much Richard. Yes she’s checked all my blood count. I’m having more bloods done soon as she wants to keep checking. I will take a look at that page. Honestly, I’ve had more good advice in the last 24 on this page than I’ve had in many recent years. Thanks again.
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Hi @katy94,
Welcome to the community and thank you for joining us. Firstly, congratulations on the birth of your daughter I'm sorry to hear of the difficulties you have been experiencing and I hope that the appointment with the neuro-physio will be useful? I can see that some of our wonderful members have already responded, I just wanted to say hi and to let you know I also have CP so if you ever want to ask any questions, please do and we'll do our best to answer. Best wishes, thank you.
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