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3 years no diagnosis, struggling with symptoms
I've been suffering disabling symptoms which have gone undiagnosed for almost 3 years. I was 19 years old when I was struck by extreme constant nausea, upper abdominal ache, approx 2 inches above belly button. I went from being extremely active to having barely enough energy to make the stairs. I have very cold feet…
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Larsen Syndrome
Hello, I hope this post finds you all safe and well as can be. I requested my medical notes, and on looking through them, I discovered as a child I had been diagnosed with Larsen Syndrome, and on looking it up, I was astounded to discover that it describes me to a T. But, I can’t find any information on wether this is a…
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Help, sores on legs only, intense muscle pain
Hi everyone, I desperately need help, I have itching and sores on my legs only coupled with intense muscle pain, fatigue and headaches. I am under a dermatologist, had mris seen neurologist and vascular surgeon and still no diagnosis, my white blood cell count is high and I am low on vit d and b12. The pain is now so bad I…
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Bizarre illness, doesn't make any sense to me
I have this strange illness I don't know how to explain. I go back and forth between thinking it must be physical, and thinking it must be psychological. It doesn't really seem to 'fit' either model of illness. It shouldn't exist. The main feature of this illness is that I experience stomach pain, nausea, shortness of…
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I need help finding a diagnosis. Tumor + POTS
Hi my name is Calli. I have an undiagnosed illness. My junior year of high school I took accutane which led to stomach issues and severe stomach pain 2-3 inches above my belly button. I was told it was anxiety after upper and lower endoscopy. I was told later maybe it’s IBS because I was dealing with constipation. Months…
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My experience with fibromyalgia so far
Hi, Thought I would post my experience with fibromyalgia so far. As a bit of context, I'm a male in my 40's with a full-time job in IT. Before the diagnosis: The Fibro crept up on me slowly and looking back I can see that it must have been with me for at least three years prior to me realizing. By 2015 I was taking as many…
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How can i have a life with hidden disabilities when no one believes me!
Hi, I’m M from the UK. It’s a long story so i will try and break it down. lived abroad for most of my life. I did really badly in school and had to leave school after year 12 I only have BTEC English 1 and ICT 1/ customer service exp/retail exp No matter how hard i tried to study when i was at school, i never passed…
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Sysmptoms of fnd or not ?
i've been getting these following sysmptoms over Sweatin like hot all the time no temp tho but just hot & stomach ache .sleeping now has become up to 10 hours a day muscle spasms in legs all time now & eye twitching comes & goes now & now complusive disorder with thinking i need to unblock my nose so keep picking at it…
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I don't want the cure, diagnosis would be more than enough
I
have lost my hope for recovery quite a while ago, finding out the
name of the condition/disease that has ruined my life would be
satisfactionary enough. There have to be some people out there in the
world who suffer from the same illness, it has to have a name. I
don't believe that I'm this special and definitely don't…
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Unexplained Facial Rash
I am currently being treated for parasites in the stomach and/or bacterial infection with antibiotics as every day I wake up with facial rashes and swollen eyes. My face and now neck are incredibly itchy, gets very dry, is red and raised on the skin which is extremely noticeable and unpleasant to look at. Steroids did stop…
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beeing disabled, but you can not see it
o feed up with peple saying your not disabled,but just becos you can not see it does not mean its not there they call me name as i have a scooter to get a round
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Looking for support. I have PPMS and an infection that won't clear.
Hi there to everyone hope everyone is well. I have not been well almost 6 weeks now haven't felt like this for over 2012 this was when i was diagnosed with PPMS. I taken first dose of vaccination pfizer and was fine until a few days later? I had a UTI and was prescribed some capsules and finished the cause felt fine then…
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Hi, I'm el21! I experience shaking, which may be essential tremor. How can I come to terms with it?
Hi, even though I have not been fully diagnosed I have been told my shaking is due to either essential tremor or anxiety, I myself have ruled out anxiety , they started in my hands when I was around 14 and I am not 21 and it has progressed meds dont seem to work they only block it visually but I can feel it travel up my…
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Medical Buddy Scheme
Hi, I apologize for posting this twice - I think I posted it in the wrong place earlier. We hope you are well. I'm hoping to let you know about the medical buddy scheme for people with acute neurological injuries. It aims to pair you up with a medical professional on a 1:1 basis e.g. a doctor with whom you can discuss your…
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Undiagnosed stomach issue, please help!
Hi, Im 23 years old and I started having serious what I think is "stomach issues". Ive had on and off bloating,diarrhea,vomiting,abdominal pain and sulfur burps. From December 26th 2020 to now July of 2021. Its been months of going to doctors. Ive seen multiple regular physicians online and in person, 1 quick minute clinic…
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Hi, I'm Michelleuk48! I struggle with recurrent infections. Does anyone else + how do you cope?
Hi my name is Michelle I've been poorly since I was 11 in the last 3yrs I've had 27 various infections does anyone else have alot infections any advice I'm at my wits end on how to cope with them xx
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Fibromyalgia depression and loneliness
Hi everyone my name is nat i have fibromyalgia and in the last year lost 2 of my closest friends the avoied me dont answer my messages i jave 5 kids and recently been really down to the point im now on45mg mirtazipine witch i really dont want to be on but cant help but feel down all the time i have no one round me as all…
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The truth about stomas and why stigma needs to be silenced.
Living with a stoma Stomas get a bad rap. A sign that the bowel is ‘dysfunctional’ and the body can’t control its own waste, our collective reaction towards them leans to awkward disquiet. This unease with the presence of poo is reinforced in myriad ways as we grow up: comedy sketches where explosive diarrhoea gets the…
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The DWP are going with failure to disclose
F A O mikehughescq Because he really seems to know his stuff, but also any help much appreciated the dwp are going with failure to disclose and are basing their case on the fact that they sent the claimant leaflets (no evidence seen in claimants house) the claimant could not read and this would appear to have been accepted…
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Fibromyalgia and walking aids, do they help ?
Good evening. I was diagnosed almost a year ago with fibro and cfs , since then I have become progressively worse, more so with nighttime pain , restless legs and really bad stiffness in my legs. I work full time (currently on furlough due to covid) . I am unable to take painkillers due to stomach issues , I am on…
