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POTS, B12 deficiency and undiagnosed illness
Hi, apologies on beforehand for a lenghty post! I'm a 23 year old female from Sweden, always been healthy, no health issues. About a year ago I started developing some symptoms of POTS - postural tachycardia, fatigue and palpitations but got no diagnosis. In february/march this year I started developing issues post-eating…
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Could you spot the signs of a brain tumour?
You might not know it but the 14th International Brain Tumour Awareness week is taking place all this week (24th to 31st October 2020). This event aims to make people more aware of the signs of brain tumours to know when a trip to the GP might be needed. This is more important than ever as the Cancer Research website tells…
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Dad has rare form of Melanoma
Morning. Apologies in advance for the long post. I don't know if this is the right place to post this. My dad has recently been diagnosed with a rare form of Melanoma. After having a blood test,3 X-rays,a chest CT Scan,an ebus and a CT Scan of his head,he's been diagnosed with Melanoma,Stage 4 which has spread to both…
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Find the Right Words - International Stammering Awareness Day
What is stammering? The charity Stamma had lots of useful information on what stammering is. What is it like to have a stammer? The physical act of stammering is only a small part of the experience of growing up with a stammer. Stamma aim to give people with stammers a platform to speak about their experiences. Stammering…
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My story and being undiagnosed.
Hello everyone, My name is Rachele-Leah <moderator removed - personal details> and I am a 17 year old student who is originally from Luton,Bedfordshire but is currently living in Romford,Essex. I have been undiagnosed since the age of 8 but was born at 29 weeks and as a result was severely delayed in everything since…
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Trying for another baby
Hello, my little girl is nearly 3 she been through so much in her little life from having a difficult birth and then when she was 4 weeks old started having infantile spasms but these were misdiagnosed for nearly 5 months, when she turned 2 she had an MRI which shows she has brain damage in the basal ganglia part of the…
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Rob Burrow: My year with Motor Neurone Disease (MND) documentary BBC1
Here's a link to the programme on the BBC iPlayer for those interested in watching. The documentary is about: For those who watched the programme when it originally aired, what did you think? Please let us know in the comments below.
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Idiopathic intracranial hypotension
Hi. I was diagnosed with IHH in June. It got a little better with acetazolamide being prescribed but the symptoms are worsening and I'm struggling to cope ? how does everyone who have it manage? I feel really lost
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Epilepsy Action Tea Break, what would your virtual tea party be like?
Epilepsy Action National Tea and Cake Break This year Epilepsy Action, a British charity that provides support for people with epilepsy, is encouraging people to go virtual and host a fun filled tea break for their family and friends. You can decide what's on the menu, draft a guest list and choose exactly when you want to…
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Tell us what it’s like to live with ADHD
This October is Attention Deficit Hyperactivity Disorder (ADHD) awareness month, an annual event held to raise awareness about ADHD and stop the spread of harmful myths. For more information and to join with the month’s activities, see the ADHD Awareness Month website. What is ADHD? The NHS website describes ADHD as:…
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How do you cope with vertigo?
Hi all, I have vestibular disorder and I'm up most days at 5am doing various exercises to make sure I'm ready and able to take on the day. It works! I haven't had an episode in over a year now but I always have my Betaserc close by just in case. It's been so long I'm worried I'm not up to date on the best ways to cope with…
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Hi, my name is Ruznara75 - does anyone else have rheumatoid arthritis or connective tissue disease?
Good afternoon, I am new to the group. I was wondering if anyone who has been effected by rheumatoid arthritis or connective tissue disease? Thank you
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Hello, I'm Mikko & I have a question about exercise to help peripheral neuropathy damage
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Hi, I have a question about neural dysfunction
I was diagnosed with neural dysfunction i have stiff fingers and pins and needles in arms legs and a lot in my l pain in lower back No one has said if this part off it.
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Rare brain condition
I have a rare brain condition called leukodystrophy shortened to ALD This has deteriated since i was diagnosed in 2010. My mobility has been affected drasticlly and need to use a wheelchair. More recently my arms have lost strength to manuver the chair. I was told i can get an electric wheelchair but looking at prices they…
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Hi All
I suffered since 2012 with sub acute dengenration of the spinal cord due to b12 deciency . Which i have a injection every 8 weeks. It has effected my breathing. So i also suffered from Hypoventilation symdrome too and have to use home ventilation at night with oxgyen. I have Asthma and Hayfever too..
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National Migraine Week 2020 - Do you have any tips for fellow migraine sufferers?
What's happening? This week (6 to 12 September 2020) is National Migraine week, an annual event organised to raise awareness about migraines and provide support to those affected. Migraines can often be misunderstood as ‘just a headache’ and this event hopes to tackle such misconceptions and help educate the public about…
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Help needed for adult son with hemiplegia
Hi Everyone, my adult son has a hemiplegia and I’m looking for a bit of support to help me help him.
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Feel undiagnosed and something mysterious happen to me
Hello I want to share something that I have been through and I want to know if someone relate to this beacuse I feel lonely on this situation so maybe someone will help me. I suffered something like 5 years from very tough tics that seem to me different from the tics that I know or saw in the net and like this. The tics…
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Searching for answers to a complex case + debilitating illness
First, please let me apologise for such a long message. We are desperate to get to the bottom of what has been a horrific and long, debilitating illness, that has robbed my 34-year-old partner, Ben, of any life. I am aware this is a complex case that is still ongoing, and hope the following summary will at least help get…
