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Hello I’m new to the group! Any tips on how to help/understand a disabled child?
Hello, I’m new to this group as we’ve been trying to find support for what my daughter has. She’s been diagnosed with CFC syndrome a rare genetic disorder. With additional needs, thought we’d come in here and see if anyone has tips or advice, books, that anyone can suggest on how to help/understand a child with a…
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Anyone had a Flexible cystoscopy?
I have to have one on Friday and I am absolutely bricking it. Anyone had one?
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Hi, my name is lin0804! I have Orthostatic tremor
Hi I have Orthostatic tremor, leg tremors and falling backwards when standing, need to hold onto things so I don't fall, it is a very rare condition and I am coping as best as I can.
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I've been diagnosed with primary orthostatic tremor. Anyone else?
I have recently been diagnosed with primary orthostatic tremor and would be interested in talking to others with the same condition. Everything I’ve read so far seems to be so negative and I’m struggling to come to terms with it .
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Wrong info from Consultant
I just want to cry ? I have been waiting 7 months to see a neurologist after my legs swelled up, I got blood pooling, pain in every joint in my body, hair loss and more than a dozen other symptoms. I struggle to walk for more than a few steps and use and walking stick and for longer walks a walking frame on wheels. My job…
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Hi, my name is cmajr! For over a year I've been battling with an undiagnosed condition
Hello everyone, I'm new here. My name's Kingsley. For over a year, I've been battling with an undiagnosed condition while still suffering symptoms. My symptoms are feeling short of breath almost immediately when I sit upright on a chair and ,or when I stand at a spot for long. I also feel the constant need to expel mucus…
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Hi, I'm Ioana31! My daughter has a very rare gene mutation (SMC1A) and global development delay
My daughter, Sara is 8 year old and her diagnostic is a very rare gene mutation (SMC1A) and global development delay. Thank you!
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Parsonage Turner Syndrome
I first had PTS in 2010, it was the most pain that I have ever been in. I could not move my right arm at all while the nerves in my arm were dying off. The first thing that you notice is the muscle wasteage is right from day one, with the most excruciating pain i have ever had.The pain lasted for almost 3 weeks and i had…
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Inclusion Body Myositis
I have the above condition and I would welcome any information I can find. I am told it is rare and there is no treatment. It is a muscle wasting condition which mainly affects arms and legs but it is not terminal.
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Hi, my name is Rubygirl! Could my high blood pressure be caused by the coronavirus vaccine?
Hi everyone just joining this group as I am interested in the Covid vaccines and their safety
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Hi, my name is yvojo28! I've just been diagnosed with peripheral neuropathy
Newby here. Just been diagnosed with peripheral neuropathy. Still learning what to expect
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Mast Cell Activation Syndrome? Severe 'functional' neurological symptoms
Hi everyone. It's hard for me to know what to write here without the floodgates opening so i'll try and keep it brief. I've been having horrible neurological symptoms for a very long time, but had been misdiagnosed and just left to exist. I have been extremely isolated. I have finally got into the medical system with the…
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'You don’t look disabled enough to use accessible toilets'
The Metro: Autistic girl told ‘you don’t look disabled enough’ to use accessible toilets Have you experienced discrimination for 'not looking disabled enough'? Have you found staff to be understanding of less visible conditions? What more could be done to raise awareness of different types of access needs?
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Obsessive thoughts that I’m going to do something bad
For my whole life I have had constant worries regarding taking some action that I don’t want to take. This is hard to explain so I will give a few examples… - While driving, I get worries that I’m going to crash the car on purpose. - While cutting food with a knife, the worry is that I’m going to harm myself or attack…
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Does anyone have experience of Neurofibromatosis (NF1)?
Hello, I'm pleased to join this forum. I have siblings on Special Guardianship who both have disabilities as a result of a genetic condition Neurofibromatosis (NF1). The lad has ASD and Learning Disability and the lass has ADHD (medicated 3 times daily) and does not sleep well. I'd like to know if there's anyone in this…
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Neuropathy
I was diagnosed with diabetes in 2007. Gradually over the years I started to get pain in my hands and feet. I started with burning and tingling sensation and the pain was unbearable. I was put on morphine patches, they did help for a while but then got allergic to the plasters. I'm now on morphine tablets called shorter.…
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Hidden disabilities and the DWP Rant
this week the DWP have made me feel very low. I have serval mental health issues plus physical issues with my neck and my lower back. I have carers come into my home and they do not seem to care that I am not flexible on the days I can work I have considered a mandatory reconsideration but they said no I am tired of…
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finally getting the cataract surgery even though I've got epilepsy!!
Posted here a couple of weeks ago about needing cataract surgery but doctors think it's too dangerous because I have epilepsy, NHS would do it with a general, feels like a sledge hammewr to crack a nut, but I tried another private hospital which has treated me well before. Yes, hooray!! He did question me thoroughly, but…
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burning feet syndrome
hi quick up date i have been diagnosed with burning feet syndrome as well as arthritis in my knees and shoulders do anybody know if they are linked
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fibromalagia
interested to talk to other people about his condition, thank you
