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not sure if i should get a wheelchair?
Hi! so for as long as i can remember I have had some problems with walking, my knees hurt and click, same with my hips, my feet turn in and i stumble quite a bit. I don’t think I look obviously disabled from the way I walk however my parents would comment on me walking weird and yell at me to correct it. I haven’t got any…
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Help with disability aids
Hi, sorry if this is the wrong category I'm very new here (made an account only a few minutes ago) I've gotten a diagnosis last year and have only just warmed to the idea of using an aid, I feel a bit anxious about it and worried people in my life will think I'm exaggerating. I ideally need a cane or a wheelchair but I'm…
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Anyone else with mastocytosis and able to offer some advice?
Hi all I am quite new my name is Stuart I was diagnosed with mpn I recently had a bone marrow biopsy my results I was told yesterday by the haemotologist I have mastocytosis which is a form of leukemia so not good they have ask for specialist advice from other hospitals so you can emagine my head is all over the place is…
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False memories
I have a head full of things that never happened to me I used to drink quite heavily but an accident 35 years ago put paid to that – I fell in the road and damaged my basal ganglia which affected my movement and memory as well as speech – at least this is what I have spent the last 35 years believing – but the truth is…
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Undiagnosed condition causing anxiety
it’s been a while since I posted on Scope forum which I see as a positive. But I am anxious and want to share and see what advice people may have I have had medical issues all my life, currently diagnosed as anxiety and depression, dyslexia, a rumbling disk, and no diagnosis for chronic pain, low energy, and poor mobility.…
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Low folate
I've now had low folate levels 3 times. I'm calling the doctors this morning to ask why this keeps happening. My liver results are raised and my folate level is 2.3 all other blood results are normal. I eat a varied diet and I know your body needs folate as it doesn't store it for long. I've read folate can affect liver…
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NHS Refuses to treat me
Hello I have just joined after finding out about Scope on goggle. I have lots of chronic pain following a serious car crash 24 years ago, ostperousis server and mental health issues. I keep getting sick and food gets stuck in my throat from scar tissue from the traciostamy I had after my car crash it saved my life. The…
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Atypical cases in medicine and when the 'experts' are wrong
A discussion about scientific evidence. What we know and when clinicians are wrong. Owning up to limitations and what can be done about it.
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Terrible experience with health service
Just here so people can share their experiences. The previous discussion was closed on account of supposedly giving medical advice. Had ongoing problem for ten years that related to a dodgy cosmetic product that was some microbial substance. Thanks
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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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Chronic illness: How do you navigate ongoing medical trauma?
I’ve been struggling with horrible chronic symptoms for years. I’m diagnosed with fibromyalgia (had to borrow money to go private for that) and now I’m deteriorating in so many frightening ways. The problem is, every time I gather enough spoons to speak to a GP, I get treated like a malingerer. The impatience and contempt…
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#AreYourKidneysOK - World Kidney Day 2025 comes to a close..
Today is @WorldKidneyDay, Hidden Illness and Disability day (or similar celebrations) I've lived most of my life with CKD (chronic kidney disease) you can't see it. CKD affects 1 in 10 of the UK population, 1 in 5 of the US population and yet public awareness is insanely low.. "No I can't have another kidney" "oh how long…
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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 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…
