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Undiagnosed ataxia-like condition
Hi there everyone. I'm posting on behalf of my sister who three years ago suddenly developed a severe loss of balance (she is unable to walk or stand upright unaided) and slight impairment to her speech. She had a similar, less severe instance of the same thing a few years before that from which she recovered. All…
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Pressure sore, Oestomyelitis & potential amputation.
Hi, I have a pressure sore on my backside for the last three years. I have had multiple skin grafts to try close it but none of them worked. I have now been told I have very bad oestomylitsis in the pelvis and my only option is to get my leg amputated, its actually called a hind quarter amputation so includes the pelvis.…
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ME/cfs diagnosis problems
Hi, I don't really know where to begin with all of this so I'll start by introducing myself I suppose. My name is Skye and I am a young woman in my 20s. I have struggled with mental health issues for a long time now, over 1/3 of my life, and have a few diagnosis - joint anxiety and depressive disorder, anorexia, and…
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Facet joint Abration
has anyone had this procedure carried out recently
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No support from any authorities
Hello my name is Hayleigh I was diagnosed 5/6 years ago with heart lung and brain disease 10 years ago I was in a coma for 6 weeks malignant neuroleptic syndrome CADISIL? Non epileptic attack disorder I’ve had strokes MS and many other things I have not had any appointments any check ups no scans no tests nothing! What can…
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Dose anyone know about Sleeve gastrectomy
My physiotherapist come yesterday it wasn't very good news , they can no longer help me he's basically said I'm going down the route of being bed ridden due to my legs can no longer take my weight , and the amount of pain I'm in through the arthritis he said about getting me referred over to have surgery to lose weight so…
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Undiagnosed & relationships with similar people
I have always been undiagnosed and have never met anyone who is in the same or relatable situation to myself and is living with a mystery condition. I am interested in getting to know new people who have unique and unknown conditions. Feel free to reach out.
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Hair tourniqueton my head
Noone can see it but incan feel it. The pressure building circulation being cut off. I'm confused and I feel pressure behind my eyes. I looked up that I could put Nair on the spot and I did and overnight through working it into my scalp the pain started to subside and the sound of snapping could be heard. I hope this the…
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Body integrity dysphoria
Advise needed I met somebody some years ago - online. We
developed a 'virtual friendship'. It soon became apparent that he had BID
(in my opinion). He wanted to know how he could become disabled both
physically and mentally. He has classic symptoms of BID with the exception his
desires are truly not sexually perpetuated.…
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Brain AVM
Hi everyone, I hope you are all well. My dad has AVM and is struggling physically, emotionally and mentally. It would be great to speak to some of you guys to share experiences. I will be showing him all of your responses. If you have any advice on what I could do to help or to make it easier for him please let me know. We…
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Hi, my name is annhorst01!
Hi Jade, I was diagnosed with Spastic CP in all limbs at the age of 53 by the Chief of Neurology at UCSD, again by the Chair of Neuromuscular at UCSD, and again by a Neurologist at UT Health in TX. They ruled out MS although I have several unique MS symptoms. But brain MRI is normal. They can't see the CP on MRI. I was…
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Penile discolouration extra skin
Had this for like 3 years and it just keeps getting worse. Dull pain in penis for last 6 months [Sensitive images removed by moderator]
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Sudden dysphagia. Feel so alone.
Hi, I'm hoping for advice from anyone with swallowing problems. I have ehlers Danlos syndrome and although I was diagnosed with associated esophageal dysmotility 10 years ago, I have managed so far with only a few problems. Sometimes I've had to push food down with water. I've increasingly often "been sick" but the food…
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Getting a diagnosis
Hello to all of you here, I’m here because I’m struggling terribly right now with getting doctors to take me seriously. I’m 29 female and I’m having a lot of symptoms of motor neurone disease, I’ve done much research and am almost certain I could have this. My symptoms started in may 2021 after a hospital stay (had many…
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How do I get services to listen
I want to scream. I am going though a very slow legal process due to the local authority refusing to meet my needs under the care act. It’s been 3 years. The pattern is social service do a poor needs assessment including no medical evidence. Refuse my needs. Make out I’m lying or manipulating a situation. I get forced to…
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ACC and NF1 - Agenesis of the Corpus Callosum and/or neurofibromatosis
Hi, I wondered if there are any parents of children with Agenesis of the Corpus Callosum and/or neurofibromatosis here? My 4 year old son has both conditions and it would just be nice to talk to someone with shared experience. Corinne x
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For those with complex treatment regimes how do you balance treatment and life?
I have a lot of health issues. I have multiple chronic / rare diseases. In different organs. All require an element of treatment. My daily treatment is 8.5- 12.5 hours a day. I’m finding it impossible to manage. This includes, nebulisers, chest physio, neuro - physio, stretching, medication, Cathers. NIV (non- invasive…
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Operation for spinal stenosis
Wow just had the phone call i was dreading in away. Was finally diagnosed before Christmas with spinal stenosis, the consultant said it had gone to far a thought i'd need a fusion operation. He spoke to the surgeon last week and he agrees to the operation, i'm really frightened now any one else on here had this please.
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1 in a million. Moyamoya Diease
It was confirmed I have Moyamoya disease last week almost a year from my first stroke. 18 months from my first neurological symptom. Moyamoya is a rare progressive neuro- vascular brain disease. The arteries in the brain close off and to compensate tiny vessels develop. The tiny vessels try and keep blood pumping and get…
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Hi, my name is Sonic63! I've just bought a hidden disabilities lanyard
I just bought a hidden disabilites lanyard so I dont have to explain my health problems to people who know nothing about it and I feel like I am fighting back at last.
