-
Mast Cell Activation Syndrome? Severe 'functional' neurological symptoms
Hi everyone. It's hard for me to know what to write here without the floodgates opening so i'll try and keep it brief. I've been having horrible neurological symptoms for a very long time, but had been misdiagnosed and just left to exist. I have been extremely isolated. I have finally got into the medical system with the…
-
'You don’t look disabled enough to use accessible toilets'
The Metro: Autistic girl told ‘you don’t look disabled enough’ to use accessible toilets Have you experienced discrimination for 'not looking disabled enough'? Have you found staff to be understanding of less visible conditions? What more could be done to raise awareness of different types of access needs?
-
Obsessive thoughts that I’m going to do something bad
For my whole life I have had constant worries regarding taking some action that I don’t want to take. This is hard to explain so I will give a few examples… - While driving, I get worries that I’m going to crash the car on purpose. - While cutting food with a knife, the worry is that I’m going to harm myself or attack…
-
Does anyone have experience of Neurofibromatosis (NF1)?
Hello, I'm pleased to join this forum. I have siblings on Special Guardianship who both have disabilities as a result of a genetic condition Neurofibromatosis (NF1). The lad has ASD and Learning Disability and the lass has ADHD (medicated 3 times daily) and does not sleep well. I'd like to know if there's anyone in this…
-
Neuropathy
I was diagnosed with diabetes in 2007. Gradually over the years I started to get pain in my hands and feet. I started with burning and tingling sensation and the pain was unbearable. I was put on morphine patches, they did help for a while but then got allergic to the plasters. I'm now on morphine tablets called shorter.…
-
Hidden disabilities and the DWP Rant
this week the DWP have made me feel very low. I have serval mental health issues plus physical issues with my neck and my lower back. I have carers come into my home and they do not seem to care that I am not flexible on the days I can work I have considered a mandatory reconsideration but they said no I am tired of…
-
finally getting the cataract surgery even though I've got epilepsy!!
Posted here a couple of weeks ago about needing cataract surgery but doctors think it's too dangerous because I have epilepsy, NHS would do it with a general, feels like a sledge hammewr to crack a nut, but I tried another private hospital which has treated me well before. Yes, hooray!! He did question me thoroughly, but…
-
burning feet syndrome
hi quick up date i have been diagnosed with burning feet syndrome as well as arthritis in my knees and shoulders do anybody know if they are linked
-
fibromalagia
interested to talk to other people about his condition, thank you
-
Has anyone here managed to come off Venlafaxine successfully and how did the reduction go?
I am nearly 70 and started taking sweats,(just like menopausal sweats.) This has been investigated and they couldn't find a cause. However, it was suggested that my Venlafaxine may be causing this. I agreed to start a reduction 2 weeks ago but I am concerned how this gradual reduction will affect me. Has anyone here…
-
Hello, I'm Eirloula - thoughts on invisible disabilities
Hello, I've joined as I'm still feeling unsure about the term disabled. I have multiple health problems (EDS, POTS, Asthma, Psoriasis, IBS/IBD and I suspect fibromyalgia) that are invisible, they require daily medications and monitoring. I deal with chronic pain and fatigue almost every day (though I've not bothered seeing…
-
health
health. Epilepsy is not one single condition. Epilepsy is defined as a spectrum of disorders that involve the central nervous system (brain and spine). In epilepsy, abnormal brainwaves disturb brain activity, leading to seizures. Seizures may cause people to have unusual sensations or emotions, behave in unusual ways, or…
-
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…
-
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…
-
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…
-
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…
-
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…
-
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…
-
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…
-
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…
