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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.
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Hypermobility disorder problems...and I have no support
I'm having one of those days where pain has been there for a while and it starts affecting me emotionally and now I can't stop crying. I have no support for my hypermobility disorder (whether its HSD or hEDS I don't know yet). And now a tendon/bone? I don't know what it is that is just below the kneecap is having shooting…
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diabetic type 1
has anyone had really serious neurological problems.My condition is very serious .I have continual pain is in my body but the main area is in my lower legs bad pain in feet and my walking ability is almost zero.When i go to bed at night he real problems begin.My feet are constantly cold are so sore and my feet throb so…
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Muscle Inflammation
I have a very rare condition from few years which has worse in the last month or so where if I carry any weight my muscle Inflames. I am 39 years old otherwise healthy with no other conditions. If I carry groceries bag weighing even about 2 kg on my palms, arms or shoulder or anywhere that part will inflame. It takes days…
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New to this group
Hi, I'm just after people's advice. I have had FND (functional neurological disorder) since August 2013, it affects my mobility, brain fog etc. I have recently been diagnosed with peripheral neuropathy in both legs(by a doctor) and been put on gabapentin, but this does nothing to prevent the numbness etc. My query is that…
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MdDS
Anyone here with M.E. and or MdDS ? Just lost my job doing outwork from home and don’t know what to do. I used to be a qualified nurse but can’t work away from home because of the above, I also have an overactive bladder . I don’t know if I qualify for any benefits, I did used to get DLA but didn’t get PIP as I can do the…
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Specific worsening of fibro symptoms
Hi, I've posted elsewhere before but something has been happening that's been impairing a lot of things and it's irritating because I can't do things that I want. My chronic fatigue has been worsening over the past 6 months and I've got a "new" symptom (I say new in quotes because it sometimes happened anyway, but now it's…
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Am I too young to have spinal stenosis?
After having problems dince the age of 30 an MRI has just shown narrowing of the spinal columb. And flattening of my spinal cord from C4 to C7. No one has said spinal stenosis and the junior nurologist i saw has ordered more MRIs on my lower back and neck. Although i suffer with numbness in arms and hands and a lot of pain…
