If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.
Find out how to let us know if you're concerned about another member's safety.
Find out how to let us know if you're concerned about another member's safety.
Do I have a "congential syndrome"
Options
cowbaygirl
Community member Posts: 1 Listener
I am perplexed and am hoping someone else can fit my puzzle pieces together.
I am 44 years old. 4 years ago I suffered nerve damage which led me to a neurologist. The injury healed but I was left being told I had mild Cerebral Pasly. Fast Forward to now - I am seeing an eye surgeon about my ptsois which leads me to another Neurologist. This amazing person starts piecing together many subtle parts of my health history ... doesn't have a name but says I have a congenital syndrome. This is what I know. I have clumsy left side. Exaggerated reflexes on left side. Slight head tilt to the left. High arched palate. Had congenital hip displasia on left side. Had a brace for inward turned feet. Hospitalized as an infant with skin condition my mother says looked like my body was an open sore. I have asymmetrical eye sockets. I have mild scoliosis. I have OCD and anxiety. I have lichen schlerosis. I have chronic constipation. My depth perception is poor. My ability to remember a face is ****. My sense of direction is non existent. I have a wonderful life - nothing that is preventing me from having a full life - but am now curious if some of these subtle things can give me a name for my "congential syndrome"
I am 44 years old. 4 years ago I suffered nerve damage which led me to a neurologist. The injury healed but I was left being told I had mild Cerebral Pasly. Fast Forward to now - I am seeing an eye surgeon about my ptsois which leads me to another Neurologist. This amazing person starts piecing together many subtle parts of my health history ... doesn't have a name but says I have a congenital syndrome. This is what I know. I have clumsy left side. Exaggerated reflexes on left side. Slight head tilt to the left. High arched palate. Had congenital hip displasia on left side. Had a brace for inward turned feet. Hospitalized as an infant with skin condition my mother says looked like my body was an open sore. I have asymmetrical eye sockets. I have mild scoliosis. I have OCD and anxiety. I have lichen schlerosis. I have chronic constipation. My depth perception is poor. My ability to remember a face is ****. My sense of direction is non existent. I have a wonderful life - nothing that is preventing me from having a full life - but am now curious if some of these subtle things can give me a name for my "congential syndrome"
Comments
-
Welcome and good luck
-
Hi @cowbaygirl welcome to the community! Unfortunately, we are not medical professionals therefore we do not know. Hopefully, there is someone who experiences similar symptoms as yourself and hopefully put a name to itDisability Gamechanger - 2019
-
Hi @cowbaygirl
Welcome it’s great to meet you this evening.
“Wow” you have got a very very long story.
Hopefully one of our members might be able to shed some light on things for you????? -
Welcome to the community @cowbaygirl@Ami2301 says we cant give medical advice here and so it would be better to speak to a medical professional
Scope
Senior online community officer
Brightness
Categories
- All Categories
- 13K Start here and say hello!
- 6.6K Coffee lounge
- 69 Games lounge
- 385 Cost of living
- 4.3K Disability rights and campaigning
- 1.9K Research and opportunities
- 199 Community updates
- 9.2K Talk about your situation
- 2.1K Children, parents, and families
- 1.6K Work and employment
- 768 Education
- 1.7K Housing and independent living
- 1.4K Aids, adaptations, and equipment
- 586 Dating, sex, and relationships
- 363 Exercise and accessible facilities
- 737 Transport and travel
- 31.6K Talk about money
- 4.4K Benefits and financial support
- 5.2K Employment and Support Allowance (ESA)
- 17.1K PIP, DLA, and AA
- 4.9K Universal Credit (UC)
- 6.2K Talk about your impairment
- 1.8K Cerebral palsy
- 869 Chronic pain and pain management
- 180 Physical and neurological impairments
- 1.1K Autism and neurodiversity
- 1.2K Mental health and wellbeing
- 317 Sensory impairments
- 818 Rare, invisible, and undiagnosed conditions
Complete our feedback form and tell us how we can make the community better.