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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.
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Opinion on back pain going untreated
Hi everyone! I am am not really sure I am in the right place here, but needed to seek some advice on my story. At 21 I had emergency surgery to relieve pressure on my spinal cord after getting cauda equina syndrome - and fast! This developed two days after trauma and was aggressive. I woke up with full saddle anesthesia…
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Fnd
Hello I’m wondering if any one can help I have been having attacks of fnd for last 5 years in 2014 my legs stop working had mri and neurologist appt given a web site and sent home since then my legs have gone weak and neck then in my face I’ve been lucky this only seems to last a few days neurologist saw me and said it’s…
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Is it worth it?
Apologies if this is in the wrong section but there isn't a Chronic Pain section that I could find easily, though admittedly my major problem these is the Neurological Pain caused by continuous Chronic Pain damage over a long period. Today is yet another bad day, I get them quite a lot but today is a day I should ask for…
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Isolation of deaf
I think the idea of sending out postcards etc to the lonely is such a good idea. I for one know how deaf can isolate. Pen pals would be so good too even for those of we already retired. I had penpals years ago for the same reason. Lack of sound.
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CIDP
Hi, I was diagnosed with CIDP in November last year. Anybody out there who would like to share experiences?
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FND
Just been diagnosed with F N D
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Anyone with Functional Neurological Disorder?
Hi does any one have this condition and how does it affect your live and what help is their out thier
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Debilitating, undiagnosed set of symptoms - anyone recognize?
Hello, I recently came across this forum, and it is nice to know that I'm not the only one who suffers froma disabling, undiagnosed condition. I feel like I can't really talk to anyone about this because no one seems to take me seriously. I will list a few symptoms in the hope that someone can recognize them (though I…
