Do I have a "congential syndrome"
cowbaygirl
Online 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"
1
Comments
-
Welcome and good luck0
-
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 it
1 -
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?????0 -
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

0
Categories
- All Categories
- 15.8K Start here and say hello!
- 7.5K Coffee lounge
- 105 Games den
- 1.8K People power
- 159 Announcements and information
- 25.2K Talk about life
- 6.2K Everyday life
- 508 Current affairs
- 2.5K Families and carers
- 873 Education and skills
- 2K Work
- 579 Money and bills
- 3.7K Housing and independent living
- 1.1K Transport and travel
- 642 Relationships
- 1.6K Mental health and wellbeing
- 2.5K Talk about your impairment
- 879 Rare, invisible, & undiagnosed conditions
- 939 Neurological impairments and pain
- 2.2K Cerebral Palsy Network
- 1.2K Autism and neurodiversity
- 40.8K Talk about your benefits
- 6.1K Employment & Support Allowance (ESA)
- 20.3K PIP, DLA, ADP & AA
- 9.1K Universal Credit (UC)
- 5.3K Benefits and income

