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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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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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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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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…
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M.E /cfs treatment
Hi,I was diognosed with me,cfs 6 years ago and havnt had any treatment, what treatment is available to me?my docter suggested cbt therapy ?. I also have fibromyaliga which I get treatment for.thanks for reading xxx
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Disclosure of medical conditions to your employer?
Hello, Guys I really would appreciate some input with some links to backup what is the current employment law. I saw my GP today and she told me when my employer gives me a health questionnaire to fill under the law I am obligated to disclose my medical condition. If I don't and they later find out they can terminate my…
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Hi, my name is Kam! clumsy symptoms??
Hello everyone and thank you for letting me be part of your community. I suffer from various symptoms , some of which you may be very familiar - chronic fatigue and pain , sleep disturbance , irritable bowel, food intolerance , chronic UTI. however there is one strange symptom that I am embarrassed to talk about- it falls…
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Fibromyalgia
Just to let you know a bit about my story, I have been enduring for the last year or more with my GP Practice doing a CT Scan, ECG Test, 31 blood tests and currently no official diagnosis but I went private a month or so ago and was prescribed Duloxetine which was dispensed through my GP Practice but Duloxetine has…
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The Neurologist has not been honest
Hello, I am relatively new here and I am hoping - who-ever reads this - might let me know their thoughts, please? Since a few years I have a lot of neurological symptoms that I cannot place with my other disabilities. So, I have asked for a referral to the neurologist last June (2023). Finally, I was asked to go an see him…
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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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Protracted hiccups, no one can work out why, I'm tired and frustrated
I've had protracted hiccups/painful diaphragm spasms (whatever you want to call them) for nearly 7 years now, and they've slowly got more frequent and intrusive/causing other symptoms over that time. Last year, after going through several different kinds of medication, I got put on baclofen, which has reduced the frequency…
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POTS cardiologist /specialist in South West
Hi, I'm pretty sure I have POTS (postural tachycardia syndrome) in addition to my long term M.E/CFS. (Get dizzy standing, obsessed with finding chairs, heart going nuts and passed POTS criteria for Nasa lean test). I see GP later this week. I'd be very grateful for advice on: Are cardiologists familiar with POTS, and is it…
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My IBD .
I have not got a flare up of my IBD , but I've had a few issues today . When my stomach isn't playing ball. I hate myself and feel very teary 😢.
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Does anyone else have chronic 247 severe throat pain?
Hi everyone. I suffer with severe chronic throat pain which means I basically can't talk at all. I've had this for 3 years with no reason and it being down to 'stress' I am in agony 247. I'm in such a dark place and feels so lonely not being able to even find anyone else with a similar problem! Anyone out there suffering…
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Epidermolysis Bullosa
Hi there, i suffer from Epidermolysis Bullosa, it's a genetic blistering skin disease. I am in the process of claiming PIP and have a Tribunal hearing next month. Worrying myself silly. Never met any other folk with my condition, so if there is anyone here who is a fellow sufferer please say hi. Thanks.
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HEDS/JHSD
Hi everyone, I am 44 and have always had joint hypermobility, often have subluxed joints etc. I was diagnosed with HEDS but it was changed to joint hypermobility spectrum disorder, because they aren't diagnosing HEDS anymore apparently. Today I started to get a bad pain in my ankle, I looked at my foot and noticed it's…
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My body jerks 60 times a minute unless I take medication
This started around 2004; jerking happened every few minutes back then. By 2013 it was so bad I had to retire early (had planned on age 70, retired at 66). I'd been faking random needs to move around the office a lot rather than just sit there jerking, but I was losing so much sleep that my new doc, a sleep specialist,…