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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 **** 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…
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nightmare mask wearing for deaf and hard of hearing
hi everyone something i really need to get off my chest lately, since the lockdown as you know everyone practically has to wear masks, do you realise what a nightmare it is for those that are deaf and hard of hearing especially if you dont know sign language and they dont know sign language either, people can be so…
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Tethered spine
Hi there I just wondered if anyone has had experience of this and if so would be happy to share symptoms and treatment Many thanks Pix x
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The Tethered Cord Syndrome. What is it? Video
With acknowledgement to the American Syringomelia & Chiari Alliance Project, & their recent virtual conference July 2020. Please see: https://www.youtube.com/watch?time_continue=5&v=pcXD0iFqPQs&feature=emb_title
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Tired of being sick and tired
Hi my name is Jenn. I have been feeling very ill for almost a year now. I am starting to feel hopeless as my GP says my blood tests seem ok. However when I was in urgent care this past weekend the doctor there looked at the same blood tests and diagnosed me with a uti, possible kidney stones because I saw orange "chunks"…
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My life story
How it happened I had a fungal infection two and a half years ago in my brain. At the time, the GP was puzzled but suspected a weird dormant infection in my sinuses. Could’ve been from my youth. Could’ve been from south America. Could’ve been from public transport here in London. The cause matters less than the effect it…
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Undiagnosed pain condition
Hi, I don't really have a name for what I'm living with because noone has put anything on my record but 'chronic pain'. To be honest I don't want to think about it but I've basically found myself in s situation where I physically can't brush my own teeth and noone even believes my condition is a thing. I'm just writing…
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Myasthenia Gravis: negligent care
hi there, I’m 32 and IV battling a condition Which has been suggested to be myasthenia Gravis (seronegative) for some time for at least 4 years. It renders me to have stroke like episodes muscle spasticity I loose functions like speech the ability to open my eyes and move but I can hear everything. But for the past year I…
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Life
went for a ear test because I could not hear in my TV or my husband there sent me for a MRI got a phone called say that my ears are OK but we have found something on your right side of your brain I had to wait for a phone call from hospital about it got told that I had avm on my brain went to hospital for the day for test…
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Nerve damage
Hello I had a dental implant placed 12 years ago and I’ve been in pain ever since, it damaged the mental nerve, I’m in pain all day everyday, I’ve tried anti depressants, epilepsy medication, acupuncture etc with no luck. The only thing I can think left to try is a nerve block, I’m just wondering if anyone has had this or…
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Magic superseding Science?
I figure that this must be a new process for my local hospital and must also be fairly recent. 4 or 5 weeks ago I went to A&E with new issues as well as my ongoing ones. I got a junior doctor to assess me and she didn't listen when I asked not to put pressure on my right shin because the ongoing spinal issue has damaged…
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Crohn's Disease
Hi I have Crohn's Disease,have done for 35 years.I had abscess at 21 then diagnosed not long afterwards.I had Peritonitis 21 years ago.At mo ok,but have a fistula.I have family 2 daughters,2 Granddaughters so very blessed
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Getting a better diagnosis for tics
What do you think? I was diagnosed twice with Tourette syndrome but then my diagnosis was revoked because one neurologist thought I had functional disorder and not M.E. Which is my other diagnosis. I'm the end my M.E. Diagnosis was confirmed despite neurologists trying hard to get it overturns and I was given the all clear…
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Managing my husband's Peripheral Neuropathy
Good Morning and thank you for my inclusion in your group. Needing some help and support please to be able to manage my husbands' Peripheral Neuropathy.......and your thoughts, if applicable, on the use of the drug Pregablin to manage symptoms. Thank you.
