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Non Alcoholic fatty liver disease (NAFLD)
Just been diagnosed with NAFLD, and I'm terrified, on top of all my other conditions. I've had horrific pain non stop with severe nausea for two years, had scope test to check my Gerd and see if I'd ulcers,cancer, h pylori gastritis etc then had a scan. That's how they found the fattiness in my liver,still to have more…
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It's Rare Disease Day 2025!
It's Rare Disease Day 2025! 28 February marks Rare Disease Day. It's a day dedicated to raising awareness and funds for people and families affected by rare diseases across the globe. A disease is said to be rare when it affects fewer than 1 in 2,000 people. It's estimated that over 300 million people worldwide live with a…
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Pain but doctors say everything is fine , please help!
Hello, Ive been having severe pain and fatigue for a while, but recently its gotten much worse in one wrist after i used a power tool. I get puffy ankles and hands, positive ANA test and other random positive results too. The fatigue a few years back was bad then it improved a bit and now i am back to having to nap…
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Undiagnosed fatigue
Hello All, Wanted to try and get some advice/guidance. For past 9 months have suffered with extreme fatigue. No disturbed sleep at night but wake up unrefreshed and struggling to do basic tasks without then laying on couch. Doctor has run various blood tests, x-ray and CT scan which hasn't identified why I feel so…
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Deregistered from practice
Reopened this as closed on account of 'veering on medical advice', helpfully. In the world of never use your brain and seek out 'experts' to think for you. Never endeavour to learn anything. Sorry, to say that this specialism and how its practised isn't hard to understand. It's plainly about observing 'known conditions'.…
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Deregistered from another practice
Not sure what to do as have been deregistered from another GP practice for a 'break down in communication'. Unsure what to do. Can anyone who has been in similar situation give advice. Reported unusual skin condition and they seem to want me to believe it's psychological. It's all very confusing and it caused me so much…
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Myasthenia Gravis
MG is a rare condition.In layman's terms,the messages between nerve and muscle are destroyed by antibodies .The sufferer experiences severe weakness of skeletal muscles. The symptoms can vary minute by minute and is extremely unpredictable.My greatest symptom (Today at least !) are choking on food and a closed left…
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Bleeding from the bowel
I am looking for info/support/anyone with similar experience. After feeling exhausted for a couple of months, my 30 year old son collapsed 4 years ago with a blood count of 39 (normal for a man is 120 to 140) He was given a transfusion of 4 units of blood and since then had had similar transfusions every 5-12 weeks. He has…
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Allergy? Anxiety? Neither? Nobody can tell me.
Hi all. I'm new here, and I'm not sure this is even the right place to be, since I don't have a disability (I have anxiety that can be pretty debilitating, and adhd, but that's it). But I've been searching for answers and advice on an issue I've had for a little while now and I'm hoping someone can help me out. I've…
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Unsure how to get Daughter help
Hi, 1St time posting here, so thank you. My daughter, now 14yrs old was diagnosed 18months ago with POTS is in medsto try and help her through the day and meds to help her to sleep. Every day is a struggle for her, but she puts on a brave face but inside she is exhausted. We Have informed her school of the diagnosis many…
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Hi, my name is SiobhanTear! I have just been diagnosed with Epidural Lipomatosis
I am 38 and a mother of 4. I have just been diagnosed with Epidural Lipmatoses. This mean I have gone from able bodied to have to use a wheelchair, stairlift, special bed as well as having to drag a Zimmer from around with me. I am completely Incontinent and don't have full control over my right leg. This means no more…
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Ongoing lack of treatment for odd skin parasite
Had an unpleasant conversation with dermatologist. Completely unproductive. Very difficult as don't feel listened to at all. Offering a treatment I have tried for a full year as instructed with no demonstrable effect. At this point I have a fair amount of experience given it's been well over 9 years. Just trying to keep my…
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Support
hiya, my daughter was diagnosed with a progressive neurological condition at the start of this year. I’m finding it very hard to come to terms with and really feel alone in it. I would love to talk to other parents whose children have similar disabilities. For reference my daughter is only 7. Thank you.
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Skin Disease Impact On Life Including Work
Hello Sorry to message again and for rushed post as I don't have enough time to share in detail llus usinh mob data as now no wifi access. I am running late to getting out of the flat (as a non driver with no other help) but really struggling so just wanted to ask for help from community again. My skin disease, diagnosed…
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Dissociative identity disorder
I have been recently re diagnosed as dissociative disorder f44.9 unspecified. I am receiving treatment for dissociative amnesia and dissociative identity disorder. My therapist says that the nhs are reluctant to diagnose DID as it is too expensive to treat. Has anyone else had any experiences of receiving a final diagnosis…
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Dementia and living with it alone
How do you cope with dementia alone and being no fixed abode. To once have everything in life and now have total isolation is terrible and frightening. Also depression and anxiety,panic attacks and other physical health problems. I can't go on totally alone but tried getting help from GP and nothing is taken seriously with…
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Hi, my name is FionaG! eosinophilic esophagitis condition
I’m new here and looking for support from other parents,my child has a rare condition and we’re finding life challenging at the moment.
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feel like i have bit of an 'ache/niggle' in my bones,, and so concerned:( :( :(
eg i nearly aways have a niggle in my collarbone area,, right now, my fingers - feel a bit achey,,, :( thank you for readingX
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Living with BAM
Hi, I have a condition called Bile Acid Malabsorption and I was diagnosed about 18 months ago. I also have osteoporosis in the spine and osteopenia in the hip and neck. I am finding it very difficult to cope with day to day living with having severe stomach cramps, urgently needing the toilet, terrible fatigue and joint…
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FND and cardiac symptoms
Hi. after many years battling the system, I've just been diagnosed with functional neurological disorder, which is little understood. My symptoms include left sided weakness, tinnitus, dizziness, headaches, light sensitivity and exhaustion after walking only a few yards. I have previously been diagnosed with idiopathic…
