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recurrent pneumonia for years, doctors can't explain it
Hi, I'm posting here because I figure it can't hurt. B) I'm in my 30s, female, and pretty much healthy except for this recurring problem. When I was 7 I got pneumonia for the first time, and ever since then I get sick several times a year. As a kid and young adult we didn't have health insurance, so I rarely got an x-ray…
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DO YOU FEEL ISOLATED
My name is Connie00 I live with my husband, my 35-year-old Son, and my Nephew who
is 47 years old and has severe Learning disabilities. I used to be his carer
and appointee. now my Son cares for him and Me, my life has changed so much in
the last year and half. I never thought I would need a carer or that I would have…
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Can I fly with chiary malformation???
hi completely new here ... I've been diagnosed with a chiary malformation and a rather large cyst in my spinal canal . I have many many questions but the 1st I need to ask is am I able to fly with this condition? My consultation was abit of a blur as I wasn't expecting this... so I didn't think to ask ,, but I'm due to fly…
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3 years undiagnosed.
This time 3 years ago, I was healthy as a person could be. And then I got bronchitis. Ok admittedly I'd always been a chesty child, but not particularly sickly. In my time at school I actually hated that, I was never off. I used to have to tell my parents I felt sick or deliberately get in the way of the ball in PE and…
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Vascular dementia
I am devastated,Ive just been advised after an mri I have Vascular dementia,am only 60 and don't know what to do,any help out there for me
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Teethered Chord
I joined this forum seeing that there were some posts in regards to their childs tethered chord. My daughter is now 5 years old and was diagnosed with a tethered chord about 1 year ago. She has a deep sacral dimple, which lead us to get an MRI and was then diagnosed with a tethered chord. we have been seeing a Specialist…
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The Wolfson neurorehabilitation unit - FND
Hello, I recently came out of The wolfson unit, for neurorehabilitation at Queen Mary’s Hospital, Roehampton. @Adrian_Scope and @Ami2301 you said to let you know how I got on and I thought others might be interested whom it could help. There is a great programme for Functional neurological disorder (FND) patients, it may…
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Doctor unhelpful
I have been to my doctors numerious times over the years with many issues I have suffer with for a long time infact since I was in my teens I'm now 26... Care since moving from pediatric to adult has been hell to say the least. Noone cares. I find it difficult to get my doctor to reffer me for things I and my family…
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Loved one has had very low ferritin level for months
I'm typing this on behalf of my mother. She has been feeling sick and weak for at least months and has gone to several doctors with no diagnosis. The problem is that the doctors don't communicate or share medical records, or, they are myopic and can't make diagnoses that fall outside their specialty. To get to the point,…
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Epilepsy support
Over the last 6 months, my seizures have become more regular. This has caused me to have increased stress levels. Does anyone have epilepsy who can relate to my issue?
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new opinion
Hi, this could be a long story, but I`ll try to shorten it...after all it has been 20 years! When I was 45/46 I began falling..my left leg felt like wood..then I had foot drop and stiffness in my legs and spasms in my arms. My bladder and bowels were very unpredictable. I had supra pubic catheter fitted. I was diagnosed…
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Can fibromyalgia go into remission and come back?
Good morning. I’ve just signed up to this forum as I am totally bemused by my condition and hoping you can help me. Around 4 years ago I was told I had fibromyalgia. I tried various different types of pain relief and nothing helped. I was actually unsure the diagnosis was correct but I’m not a dr so went with it. After 2…
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Paralysis in legs starting in mid twenties now in wheelchair
my dad was able to walk perfectly fine until his early twenties, his ankles began to turn in and he had poor balance. This continued until he had to walk w a walker, in which he did for yrs but bc he was basically walking on his ankles they became very swollen and is now in a wheelchair in his 50s. He had multiple test…
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I would really like to make contact with anyone/organisation/hospital who have my condition
Hello my name is Dee. I am so pleased to find this forum. I have a parilized left hemidiaphragm which was finally diagnosed about 7 years ago after many visits to hospital not being able to breath and the clinicians trying to treat me for Asthma! I now appreciate how difficult it is to diagnose this condition. In 2007 I…
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Autoinflammatory Conditions in the UK
About: Rare Autoinflammatory Conditions Community - UK RACC - UK is the UK’s patient-run, patient support group for patients and families suffering from #Rare Autoinflammatory conditions. We are a completely self-funded organisation, led by volunteer patients, parents, and experienced Medical Professionals, in the fields…
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Myasthienia gravis
Hi my name is wilson I was diagnosed with myasthenia gravis almost 2 years ago none of the medication seems to be working has anyone had similar experience
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Cannot walk straight
Hi Folks I've had a medical problem since birth in that I cannot walk straight. Does anyone know the name given to this type of condition? Thanks
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My life has changed but I think for the better
Hi I'm Sarah. I'm a married mum with two teenagers. I fell ill 8 years ago with a rare disease. My life has changed but I think for the better. I'm a dog loving, wheelchair using middle aged mad woman.
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Hi, anyone with or supporting someone with Tourettes and/or FND/MUS/Non-epileptic seizures?
Hi, I have just joined. My son is 11 and has had TS for a long time. More recently he has developed non-epileptic seizures and functional symptoms as well that have been diagnosed as Medically Unexplained Symptoms (MUS). He is starting high school next week and I am very nervous though we have provision in place to support…
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cerebellar ataxia
I’m Alan and sadly I have cerebellar ataxia so I have difficulty walking and talking . 3 years ago I was ok
