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Cop/boop.
Hi, im mark, i have a rare lung disease called Chryptogenic organising pneumonia, Ive had it for about 5 years now, just curious if anyone here has it ir knows of anyone, i suspect it was from my previous job, working in plant/boiler rooms in a university, sweeping, mopping and painting the floors. My only ppe was a paper…
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Does anyone know a counselling service in Northamptonshire specialising in epilepsy?
Hi I would just like to know if anyone knew of any counsellors based in the Northamptonshire area that specialise in epilepsy and in giving counselling to those with epilepsy as I got my epilepsy through my Right sided hemiplegia.
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Coming to terms with brain injury
Hello , I hope this finds you well . I had an accident last May , I was told I have a subdural haematoma but , I don’t feel like I’m getting better. I’ve had terrible balance, my memory lets me down, I forget loads of things, even what I’m saying , I am terrified to go out, I have ptsd about my stairs, my temper, well I…
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Tourette’s syndrome
Please help us change things for people with Tourette’s by signing the petition https://petition.parliament.uk/petitions/575370 this post gives a bit more info https://www.facebook.com/1187681671/posts/10224717261857414/?d=n
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Hi I'm Shonshi41! I've been dealing with a condition for 2 years, and non of my drs can diagnose it
I’ve been dealing with a condition for two years now. None of my doctors can diagnose it. It starts with a small red pimple and erupts into an open wound that burns, stings, stabbing pain. I can’t walk, stand, or anything. I’ve had three of them since March 2019. I just had my last surgery almost two weeks ago. I’ve had a…
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Hi to all. My so-called friend said that I didn't need my walking sticks. What do you think?
I just do not understand it I met with a so called friend this afternoon with one of my walking sticks as I would need the other hand for the basket I went into shop picked up what I wanted to buy put the basket down and I lost my grip and my basket contents went on to the floor a nice lady picked them back up for me and I…
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Hi, my name is Abb_Jones18. I think I might have ADHD, and have a psychiatrist appointment coming up
Hi, I’m 18 and currently going through the process of getting tested for ADHD. I’ve had the symptoms my whole life without realising, I’ve always struggled to concentrate in school and found myself rushing last minute with my deadlines, which has worked for in the past when I had structure but since lockdown I haven’t been…
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Anyone with EDS or Hypermobility Syndrome?
Hypermobile EDS runs in my family (grandmother and mother have it diagnosed, me and my brother are still in the process) It took my mother about 30 years to finally get a diagnosis, and since then (about 10 years ago now) she's been trying to get me and my brother diagnosed, but we're struggling to get official diagnoses,…
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Shoulder instability due to HSD
Hello, I was wondering if anyone has any tips on how to cope with shoulder instability. My shoulders (especially my right) have started to pop out of joint more regularly and I find because it's my dominant arm it really is starting to impact my ability to manage most day to day tasks, especially driving which I won't do…
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I'm worried about not being taken seriously because I might have a high pain threshold
Hi I have a spinal cyst. I'm uncertain about whether I have a high pain threshold or not. And it scares me when doctors don't take me seriously with stating it's in my head. Having been extremely Ill because of this.
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Hi, I'm tom9437! Does anyone else have Dercum's disease?
Waiting diagnosis of Dercums disease. Does anyone else have this.
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Undiagnosed problem over 4 years
Hi, My journey began more than 4 years ago when a severe heart arythima occured in a spa after a workout. Normal rythm didnt recover so they had to do a cardioversion. Several research were done but all seemed to be ok. Doctors put the blame on my lifestyle and told me to not party and train together, which ofcourse I had…
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Blood blisters or not ?
Started getting these pin **** red spots or marks coming up on few on arms ,chest area & hands been chemist & they said blood blisters which i've google'd but description for blood blisters said they raise but mine are flat there not itchy just wondering if anyone else has these ?
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My husband had a large bleed on the brain
Hi all not sure if this is the right place to join but my husband had a large bleed on the brain which has left him with some disabilities, left leg not able to move very much unable to walk without supervision and walking aids some short term memory loss blurred vision in one eye and double vision in the other. He has…
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Hello, my name is Cassie24
Hi All, I was diagnosed with FND - NEAD 18 months ago. I have convulsive seizures, mobility/balance issues, fatigue, back, hip, neck pain, tremors , migraines, light sensitivity. I am 27 and married to an amazing supportive man, unfortunately the rapid worsening of my seizures has meant I have had to give up working. I’m…
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Systemic sclerosis/Scleroderma
Hi,Just wondering how Systemic sclerosis/Scleroderma affects any one else.Its a rare autoimmune condition. It has affected my skin and joints.regards,Naila
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Diastomatomyelia, Tethered cord & Arachnoiditis
Hi everyone I hope everyone is doing ok! I just found this forum on an exhaustive search for help from others like me! I was diagnosed split spinal cord at the age of 8, operated on at 11. I managed well up until about 5 years ago after a spinal tap from a c section. My nuerosurgeon has advised against any further…
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Really keen to hear your thoughts
Hi everyone, My names Joe, I'm 28 years old and I live in Glasgow, Scotland. I'm really pretty desperate and reaching out to anyone for some helpful guidance and support. In Nov 2019 I started noticing a small spasm in my throat and thought this was the start of a cold or flu so treated with shop-bought medication. This…
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Rare blood condition
Hi my partner has a rare blood condition whereby his haemoglobin levels are very low, he has had numerous blood transfusions to increase the levels and I give him a subcutaneous injection once a week of oepotin zeta. He is currently on a research programme at the hospital as they cannot find out why his red blood cells are…
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AOS Adam and Oliver Syndrome
Hello everyone, My name is Danny. I have a disability called AOS Adam and Oliver Syndrome which is pretty rare from what I've been told by many doctors over the years. It basically means that for example my right leg has not fully formed and I have a few missing fingers on each hand. I have joined this group to chat with…
