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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 IBD .
I have not got a flare up of my IBD , but I've had a few issues today . When my stomach isn't playing ball. I hate myself and feel very teary 😢.
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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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POTS cardiologist /specialist in South West
Hi, I'm pretty sure I have POTS (postural tachycardia syndrome) in addition to my long term M.E/CFS. (Get dizzy standing, obsessed with finding chairs, heart going nuts and passed POTS criteria for Nasa lean test). I see GP later this week. I'd be very grateful for advice on: Are cardiologists familiar with POTS, and is it…
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Fasciculations and muscle atrophy
I have diffuse, daily intermittent fasciculations mainly in my left limbs (upper arm, quadriceps) and trunk. I also have diffuse muscle wasting, more prominent on the left side. I have occasional fasciculations in my right quadricep, lip and (rarely) tongue. EMG/NCS was slightly abnormal (right side) 2 years ago and the…
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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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Ongoing lack of treatment for odd skin parasite
Had an unpleasant conversation with dermatologist. Completely unproductive. Very difficult as don't feel listened to at all. Offering a treatment I have tried for a full year as instructed with no demonstrable effect. At this point I have a fair amount of experience given it's been well over 9 years. Just trying to keep my…
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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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The Neurologist has not been honest
Hello, I am relatively new here and I am hoping - who-ever reads this - might let me know their thoughts, please? Since a few years I have a lot of neurological symptoms that I cannot place with my other disabilities. So, I have asked for a referral to the neurologist last June (2023). Finally, I was asked to go an see him…