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HEDS/JHSD
Hi everyone, I am 44 and have always had joint hypermobility, often have subluxed joints etc. I was diagnosed with HEDS but it was changed to joint hypermobility spectrum disorder, because they aren't diagnosing HEDS anymore apparently. Today I started to get a bad pain in my ankle, I looked at my foot and noticed it's…
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My body jerks 60 times a minute unless I take medication
This started around 2004; jerking happened every few minutes back then. By 2013 it was so bad I had to retire early (had planned on age 70, retired at 66). I'd been faking random needs to move around the office a lot rather than just sit there jerking, but I was losing so much sleep that my new doc, a sleep specialist,…
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Fibromyalgia maybe misdiagnosed
Hey all. I was diagnosed with fibromyalgia about 8 years ago. I have widespread pain. Arms fingers back legs etc. I also had sleep disturbance and fatigue. However. Recently after a fall my pain levels have gone up massively. I went to hospital and they now believe I have a spinal injury. Which was worsened by a fall I had…
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Given up on discussing my disability.
Hi all, I have been living with cervical myleopathy symptoms and cfs syndrome for 4 years. I am unable to work because I'm having to rest though out the day. Im in chronic pain, really dizzy, exhausted, weak and heavy limbs ect ect. When I'm feeling up to it I talk to neighbours, friends and I am OK for an hour or so. I…
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does anybody else have heditary spastic paraplegia HSP
hi i just been diagnosed with heditary spastic paraplegia i was wondering if there is anyone else on here that has it. also it is very rare to have thanks .
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Oesophageal Dysmotility
I’m new on here, I thought I’d try to see if I could connect with anyone going through something similar. For about 5 years I have struggled with swallowing foods and drinks. I have been for an endoscopy a PH and Manometry test and a CT scan. The endoscopy came back normal also the CT scan. The manometry test came back…
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Medical Mystery - Can anybody help?
My current symptoms: Extreme fatigue and tiredness throughout the entire day Dissociation / feeling of faintness Extreme mental fatigue and brain fog Trouble concentrating and poor memory This all started when I was 15 years old. I was in the gym when I started feeling a little lightheaded and weak and decided to go home…
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Sister hates me for a weird reason.
long story short. my sister hates me because “I can eat anything I want and not get fat” I’m not supposed to eat. It makes me really sick and causes pain. If I do eat, it’s things I want like sweets or maybe pizza. I’m completely fed via a jejunal tube this isn’t ideal. I’d much rather be able to absorb calories and put on…
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I feel like I’ve lost my Dad
For context I’m 20 years old. I have a genetic disease which tends to get worse in adolescence and early 20’s (mito) although I’ve had mild symptoms all my life. I also have L2 autism which I have had all my life but as it is, development usually stops around age 12. (Although my intelligence and language abilities are…
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Age related Macular degeneration
My father has had "age related macular degeneration" for over 10 years - does the fact that he has this disease, mean that I can have free eye tests - or do I have to pay for them ?
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Avascular Necrosis! Trying to celebrate #RareDiseaseDay
Marking my 5th year with Avascular Necrosis in my shoulders and hips. There's quite an international community (and a few from UK) in various Facebook groups, but always wondered if there's anyone else here who is living with it also? Anyway, well done to everyone whatever you're coping with. Keep going!
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An absent Inferior Vena Cava
anyone here who heard or know someone who was born without inferior vena cava? :/ and if you do has that person any problems?
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Health condition
Hello just interested in does any one who has health conditions which symptoms can overlap. I have crohn,s disease bile acid malabsoption IBS and find some of the symptoms overlap so when i am in a flare up sometimes its hard to tell which one is which.
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Sudden incremental reductions in brightness levels while everything else remains normal.
Hello, For many years now, I have sudden events every few months to every few years that suddenly reduce my brightness levels in both eyes at the same time by a small amount, while leaving everything else (visual acuity, colour perception, etc) working normally without any change. The pattern is that there is one distinct…
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Primary Sclerosing Cholangitis (PSC)
I have the above rare liver condition. In my case because I have Inflammatory bowel disease. Most medical professionals are unaware as it’s so rare. I was called to my GP the other week to discuss the results of a blood test I had a few days before. The doctor was pleasant and said the blood test showed certain raised…
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Goodpastures Syndrome
Hi all New here and was wondering if anyone else here had a diagnosis of of Goodpastures Syndrome? I was diagnosed a few months ago after being ill and ending up in a coma in hospital. I know very little about the syndrome and neither do the consultants I am under currently ( respiratory, neurology, hematology) Apparently…
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Health Conditions
Hello just interested in how over people talk about their health conditions . I am very comfortable and open talking about my But i do know some people are not . i dont talk about my health conditions all the time but i am very confortable answering questions when asked . when i was asked about one of my health conditions…
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Has anyone tried LDN (low dose naltrexone) for their fibromyalgia?
It seems that there is so much written on the topic of LDN as a treatment for fibromyalgia and that it has helped a lot of people. Has anyone on this forum tried it with any success? Please let me know! If you haven't heard of it, this article speaks about it and gives a lot of information Thanks everyone!
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Feels like people don't understand or just keep forgetting.
Sometimes it feels like people just don't understand what I'm going through at all. I'm thankful to have good people in my life, but often it's as though they have this constant amnesia in which they continously keep forgetting that more often than not, I'm ill and tired need to pace myself at times or even need time to…
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Chronic weakness, pains, neuropathy in hands/arms feet 5 years
Hello everyone, I hope you are all doing well and surviving. I am male, 37 now. I would like to ask for some assistance in trying to understand what I have from the forum. I went to sleep one day just like any other day from working quite vigoureslly with my hands (I created items from plaster of paris and pushed them out…
