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Epilepsy
Epilepsy Action support Brighton and Hove coffee and chat All local branch and group face to face meetings and activities have been suspended. We realise that many people rely on their group meetings and activities for information and support. Some of our groups are offering information and support through local virtual…
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Body feels heavy, numb, tense, tight, stiff, weak, rigid - headache - eye pain - brain fog - voices
Hello all, I'm a male and I'm 23 years old. Below is the detailed list of symptoms of my undiagnosed illness. If anyone has heard of any illness like this, please let me know! I hate living like this! This undiagnosed illness has caused me to drop all of my classes at college. It also stopped me from doing the things I…
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Has anyone been through the menopause with lupus? Can you give me any pointers?
Having been diagnosed with lupus since 2015 it has been managed well with varying doses of steroid. I am 51yrs, the last year has been pretty dreadful, Covid caused me a great deal of stress and anxiety, on top of that my sister who lives abroad came close to death on 2 or 3 occasions due to bowel cancer complications, I…
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Has anyone got experience of coming off Adhd medication?
Hello, im a woman in my 30s who has always been told ha suffered high level of anxiety since childhood that’s never resolved with therapy or medication. My gp has referred me on for an adhd assessment after I flagged a lot of boxes and he wanted me to be investigated. I’ve been told treatment would be medication but the…
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Tourettes syndrome
Hi everyone, My name is Helen and I live in Pembrokeshire with my husband and 3 girls. My 16 year old is autistic and my 13 year old has tourettes syndrome, adhd and is selective mute. I am supporting a campaign to get medical care for our children with tourettes syndrome. Most of the UK has none. Wales has 1 specialist…
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Microvascular ischemic disease and memory loss
Hi there its been a while since I have been online. I have been investigated for MS after lesions were found on my brain in January but thankfully the lumbar puncture and other tests were clear. The neuro has now diagnosed microvascular ischemic disease (small vessel ischemic disease) which I believe is common in elderly…
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Hi, I'm denise787! I have chronic IBS + multiple food allergies, is anyone else like me?
Hello its nice to be a member of your community. I am a long term sufferer of ibs symptoms, and now in my 50s have multiple food allergies. Is anyone in the community like me
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Actually, this one is real.
Not really.
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9 months undiagnosed and feel so lost
Hi all, decided to start joining some forums for support as i feel so lost. It's been a long nine months with no end in sight. I am an otherwise healthy 28 year old, used to be very active and for the past nine months I have been suffering with a myriad of "non specific" symptoms. Prior to this I had never been to a…
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Hi, my name is LoraKae! I've just been diagnosed with Myelomalacia. Anyone else?
Hello, I’ve just been diagnosed with Myelomalacia. I’ve had two ACDF surgeries. The most recent Dec 9, 2021. This started Aug 24,2020 with my legs giving out, my whole body going totally numb. I could hardly walk. I couldn’t control my limbs. Electric shock feeling from the base of my skull to my toes. The Dec 9th surgery…
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Fibromyalgia advice
Hi, I had blood clots both lungs in December last year. I am currently on blood thinners to prevent another clot happening. Do you think this could have brought on Fibromyalgia as I have a lot of the symptoms. I was surprised to learn you can be tested to confirm this is what you have.. Thanks for your help
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Hi, I'm LucidDruid! I'm struggling to manage symptoms of Neuralgic Amyotrophy.
Hello :) I am here seeking other peoples experiences and possible advice on living with Neuralgic Amyotrophy. I was diagnosed with NA in 2010 when I was 15 years old; I had my right deltoid which is the most effected side paralysed for a good month or so, I couldn't move it, even people at school at the time said it looked…
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I have ME and long COVID. Anyone got tips on dealing with guilt of having an invisible illness?
Hi everyone ?? I’ve never really been a part of a community like this before. I was only recently (March this year) diagnosed with ME and I also suffer from long covid which is obviously pretty new as well haha. I guess it’d just be nice to be able to talk/rant to others who feel the same as me. It’s pretty rough as I work…
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Does anyone here with MS suffer with sleep apnea?
Hi, anyone here with MS suffer from sleep apnea? I have read that MS can cause it and I am soon to be tested for it. Thanks
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Stenosis
Hi I suffer from severe neural foraminal stenosis and I am in hell. I've tried every otc plus nsaids hydrocodone, gabapentin Flexeril and lidocaine patches. Nothing is working. My doctor tried to put me on lyrics but I don't care for all the side effects. My doctor sent me to a pain management doctor but he told me he…
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Please help, I cant stop shaking and vibrating on fingers and feet
M 25 YO male and obese 12 Days ago I had vibrating in my feet even when I was sitting or lying down they was constantly tingling on there own, That has gone but what has came now is when I put my feet on the floor its like ive out them in a vibrating floor and it goes all up my legs. but they dont tingle anymore when they…
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AWAITING NEUROLOGIST APPT
Hello QUESTIONS What condition is most likely to cause high blood pressure with occasional drops which result in falls? Also causes stoop posture and leaning to one side when walking? I am very weak and need help getting dressed showering and getting up from a seated position. I have difficulty using cutlery and have…
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Living with a rapidly worsening medical mystery and need help
It has been a long and mystifying journey and after six years of trying desperately to get to the bottom of my condition with no shortage of helplessness, finally it has lead me here. I want to first say that I am aware of how unusual the initial cause of this will sound. It was my birthday of 2015, I was just turning 16…
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Are there any private paediatric neurologists anyone can recommend?
My nephew has developmental regression and has seizure 6-7 times a day, he is currently on a NG tube as it is unsafe for him to swallow. He has not yet been given a diagnosis however they do suspect that he may have Leigh disease and his seizures now have become worse than before to the point that he is now crying and you…
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Multiple System Atrophy
My husband was diagnosed in 2016 with MSA and has been living with this disease since. I wonder if any other members have any experience of dealing with this condition. GP's do not seem to know much about the disease so help is very difficult. Our local hospice and Wellbeing centre has been more helpful together the MSA…
