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Access to work for transport help
Hi, I've a colostomy bag and I'm on tube feeding through a catheder on my chest 12-15 hours a day. I'm going for a part time job interview next week. My friend is taking me to the interview. If I'm successful work place will be 30-50 minutes drive or about an 1 hour multiple train journey from my home. Due to my very…
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Hi, my name is amziegrace! I just got diagnosed with ADPKD with the variant pkd1
I just got diagnosed with ADPKD with the variant pkd1, and I have several cysts on both my kidneys and liver. Searching for people to talk to that can relate and exchange stories and information.
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PKD, anyone out there familiar with this?
Hi, my name is pippaT and I have Polycystic Kidney and Liver disease. Is there anyone here that has the same or cares for someone with the same. I would love to find other PKDers to chat to and compare notes etc. Also having the all too familiar problems with PIP and ESA, but that's another story!
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Diverticular disease. How many flare ups a year do other people get?
Hi everyone thanks for excepting me into the group,my question is how many flare ups a year do other people get with this nightmare of a disease any advice would also be really welcome 🙏
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PAE for BPH Prostate
Rather than the normal method of prostate reduction - have any of you (males) had PAE (Prostate Aryery Embolisation) ?This involves blocking the blood vessels supplying the prostate with tiny plastic particles - thus reducing the blood flow and the size of the prostateI have been told that my alternatives are drugs (which…
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New Girl. Anybody else out there with good, bad or in between tales of FND??
Hi all I was diagnosed with FND 2 years ago and it was only 2 weeks ago that I met a professional who not only knew about the condition but also knew where to get help but how to get help. She also really has my back as proven by the kick-ass letter she wrote to my GP and my Neurologist. What a blast of fresh air she is.…
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Pain relief during hospital procedures
I had two hospital procedures last week1. a Sigmoidoscopy - for which I was given gas and air (entenox) as pain relief2. a flexible cystography for which no pain relif was available (except for a dab of gel on my penis head) - this was an incredibly painful experience, my blood pressure went through the roof, and I can see…
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Hi, my name is Bromsgrove11! Struggling with Chiar i malformation type 1
Struggling with Chiar i malformation type 1 . Headache under control but muscle weakness and pain is unbearable. Constantly falling over nothing too. Is this normal as I know so little?
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Trying to rational my symptoms
So I have been diagnosed with mixed anxiety and depressive disorder, PTSD, dyspraxia, non epileptic attack disorder/functional neurological disorder and I’m suspected autism and adhd. Anyway, I went to my local hospital around two months ago with feeling dizzy and really severe head ticks. They suggested an MRI scan but my…
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Diabetes ?
I had my annual blood test by my GP on Friday (supposedly to check for diabetes as well) - and the results are in .All satisfactory Serum lipid levels Serum cholesterol level 4.6 mmol/L [< 5.2] Serum HDL cholesterol level 1.11 mmol/L [> 1.45] Below low reference limit Serum non high density lipoprotein cholesterol level…
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Pain
Hi peeps now I'm 38 and have serious pain in my right hand my thumb had seized completely not allowing me to move it sinces not working the last 2 years I've noticed my joints grind click and crunch I've been for scan on hand all fine but I wake with numb hands and swollen joints drs say arthritis and prescribed naproxen…
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Functional Neurological Disorder (FND)
I have numerous autoimmune disorders but just last week I've been diagnosed with FND. Never heard of this before but after much research i'm very hopeful to be eventually with the right help to able to walk properly again, stop getting tired in the day and randomly losing my vision. I also have Non-Epileptic Attack…
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Hypermobility
Hello my name is daryl, I've not been diagnosed with hypermobilty as of yet.. but I'm here to ask questions about it. Ain't I was a child I've suffered some rapid dislocations, right elbow a few times, both knees several times including my right one last year and I haven't recovered. My wrists can have really bad days…
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Can anyone help we with my undiagnosed condition(s)?
I'll get straight to it. In November 2017 one day I noticed my muscles were fatiguing at a faster rate than usual most noticeably during physical exercise. It was seemingly spontaneous, numerous doctors and hospital appointments proved futile and this ultimately spelled the end of any hopes I had of pursuing a career in…
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Got my medication.
Picked my medication up on way for the bus, but didn't open the bag until I got home as there were too many people about. Had a look see what tablets I'm on and I have to take 1 500mg Metformin twice a day and this other tablet, that my mum also takes, which begins with an S, but I can't remember how to spell the name. My…
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I was reading something online earlier and my phone decided that it was going to do it's fave trick
called "rebooting itself " whether I wanted it to or not. Once my phone has finished rebooting itself, I happened to glance at the noticed that I had a few notifications from some of my games and apps and a text message from my local Boots pharmacy letting me know that my prescription is ready and both myself and my fiance…
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Access to work and transport help.
Hi was wondering if access to work can help with transport. I do not yet have a diagnosis but am suffering from night blindness. I am starting a new job which involves 2 busses and a decent 10 min walk. I am ok in daylight but am worrying about the nights drawing in for winter and being able to manage getting to and from…
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hEDS and Sjogren's Syndrome - not the best combo in this heat!
I'm really struggling in this heat in terms of fatigue and effects of dehydration, mostly. I have ADHD and initial/middle stage insomnia as well, so trying to recover lost energy feels like a Sisyphean task... I'm finding the joint pain from the EDS is worse at night, and can't get into a comfortable position, because I…
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Weighted bracelets for essential tremors
Hello, my neurologist has suggested I use weighted bracelets to help lessen the tremor. I bought wrist weights usually for the gym and although they are heavy, they have helped with using cutlery at dinner. I am left handed and I have had to learn to use my right hand to eat my dinner and it is not ideal. I have seen that…
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Mentally and Emotionally Vulnerable at the Moment
Hi all. This is going to be long, so I apologise in advance. I grew up thinking I "just" had eczema and asthma. 12 years ago at the end of March, at age 26, I went for an MRI scan because of nerve pain in my arms. Another MRI and CT Scan later, they found I'd been born with a Chiari Malformation, Syringomyelia, and…