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Does anyone else have a Listening Disability?
Hi all I have a life long Listening Disability, or the brain not being able to effectively process sounds and sound based communication , speech. The technical term is Auditory Processing Disorder. I was the first adult in the UK to be clinically diagnosed a having an auditory processing disorder, back in 2003, which was…
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Can fibromyalgia go into remission and come back?
Good morning. I’ve just signed up to this forum as I am totally bemused by my condition and hoping you can help me. Around 4 years ago I was told I had fibromyalgia. I tried various different types of pain relief and nothing helped. I was actually unsure the diagnosis was correct but I’m not a dr so went with it. After 2…
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Paralysis in legs starting in mid twenties now in wheelchair
my dad was able to walk perfectly fine until his early twenties, his ankles began to turn in and he had poor balance. This continued until he had to walk w a walker, in which he did for yrs but bc he was basically walking on his ankles they became very swollen and is now in a wheelchair in his 50s. He had multiple test…
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I would really like to make contact with anyone/organisation/hospital who have my condition
Hello my name is Dee. I am so pleased to find this forum. I have a parilized left hemidiaphragm which was finally diagnosed about 7 years ago after many visits to hospital not being able to breath and the clinicians trying to treat me for Asthma! I now appreciate how difficult it is to diagnose this condition. In 2007 I…
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Autoinflammatory Conditions in the UK
About: Rare Autoinflammatory Conditions Community - UK RACC - UK is the UK’s patient-run, patient support group for patients and families suffering from #Rare Autoinflammatory conditions. We are a completely self-funded organisation, led by volunteer patients, parents, and experienced Medical Professionals, in the fields…
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Myasthienia gravis
Hi my name is wilson I was diagnosed with myasthenia gravis almost 2 years ago none of the medication seems to be working has anyone had similar experience
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Cannot walk straight
Hi Folks I've had a medical problem since birth in that I cannot walk straight. Does anyone know the name given to this type of condition? Thanks
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My life has changed but I think for the better
Hi I'm Sarah. I'm a married mum with two teenagers. I fell ill 8 years ago with a rare disease. My life has changed but I think for the better. I'm a dog loving, wheelchair using middle aged mad woman.
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Hi, anyone with or supporting someone with Tourettes and/or FND/MUS/Non-epileptic seizures?
Hi, I have just joined. My son is 11 and has had TS for a long time. More recently he has developed non-epileptic seizures and functional symptoms as well that have been diagnosed as Medically Unexplained Symptoms (MUS). He is starting high school next week and I am very nervous though we have provision in place to support…
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cerebellar ataxia
I’m Alan and sadly I have cerebellar ataxia so I have difficulty walking and talking . 3 years ago I was ok
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FND Confusion
Hi , I was diagnosed with FND after 20years of investigations and non effective treatments for conditions I was assumed to have, my symptoms never fitted fully to one condition. Before I was diagnosed all I wanted was to know what was wrong with me i felt like i was a lost cause, now i know what it is I am even more…
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New to the group - fibromyalgia.
Hi. I’m new here. In completely fed up with being ignored by my doctors and they always seem to come across like they don’t even believe there is such a thing as fibromyalgia.
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Starting Support Group for Chronic Pain and/or Chronic Fatigue?
Hi there :) Not sure if this kind of post is allowed here, but thought I'd give it a go anyways. I live in Preston, Lancashire, and have been looking for a support group near me for a while, but haven't found one. I have Fibromyalgia and (likely) CFS, and have been struggling with symptoms for a long time now. I have…
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Should I be concerned about this? Head tilt/rest
My son who is now 15 months old was diagnosed with Mild Hie at birth, mild myelnation delay at 5 months and speech delay as well as both mild hypo/hypertonia at birth.He also has macrocephaly ( 4 deviations) Hes walking now but not speaking or Evan really babbling. My concern is that he tends to tilt/rest his head to the…
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Hidden disabilities - lack of empathy from employers
Good morning all...And what an awful morning it is too ⛈☔! Just wanted to introduce myself to this informative forum. I'm 53 and in full time employment as a nurse. My difficulties are hidden disabilities and come in the guise of severe and premature osteoarthritis requiring bilateral hip replacements in my mid-forties &…
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Fibromyalgia
I live in the Warwickshire Area I was diagnosed with this condition one and a half years ago and I’m really struggling with it. I would like to know what help I can receive and where do I go for advice, I’m in social housing and I am really struggling getting in and out of the shower as it is one that is over the bath, I…
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M.E. Lyme disease co-infection of Bartonella, so much more but no NHS help other than mental health
Hi to Everyone, I'm new to the site but not to SCOPE and the M.E. Association. I have an adult son with mild cerebral palsy and my foster son now 23 yrs old was eventually diagnosed with M.E. and chronic pain syndrome 2010, He spent the majority of 4 years in bed chronically ill, lots of symptoms that did not seem…
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New neurological patient survey
A new neurological patient experience survey is open, to collect vital information about the experiences of treatment and care, social care and welfare received by people affected by neurological conditions. The survey aims to collect enough data to positively influence future neurology services. About the survey The…
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Struggling
So before I had cancer I was as fit as a fiddle, an average day would entail an early morning gym session, a full day of helping others at work I worked along side the police in Domestic Abuse, then after work a HIIT gym classes, I had three children as a single mom and had a healthy work/life balance. 2015 I was diagnosed…
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Does anyone else have ataxia,
Looking for any one who has ATAXIA and how they manage and what treatment they have had please.