Anyone from the UK here?
Hi there. I'm wondering if anyone here is from/living in the UK. I couldn't find a forum or website like this in tbe UK so here I am.
But life with a rare disease can be very frustrating and horrendous really and I'd love to meet someone close by who I could share my experiences with
Hi, I'm from the
UK I'm on the South Coast
My GP hasn't really been much help over the past couple of years, i've done loads of reading & research, when i find something that has some of my strange symptoms i email her & she sends me for the relevant tests, it's gone from POTS, to Anemia, to Severe B12 Deficiency. Each time I've taken treatment I've realised almost instantly that it's an incorrect diagnosis. The B12 deficiency was actually a clue, I'm certain at the time that result was in a way correct because i can go day's without eating, my stomach just isn't digesting food quickly enough, it lays in my digestive tract, then it comes back up on me, I'm constipated for up to 10 days at a time, often i sit on the loo & the moment i stand up i throw up, it's total projectile vomiting, no matter what i take for it nothing changes, I'm always sluggish, feel heavy & miserable, yet all that didn't point to a diagnosis,
the suggestion of a possible immune condition came from my optician when i had my annual contact lens check up, she was horrified at how dry my eyes were, if she had, had her way i would have gone to hospital immediately but i stupidly ignored the warning instead asking my GP to prescribe a good eye ointment, it made no difference, then we had COVID, then all the cancellations to appointments because oof the staff shortages etc, by the time i got to see anyone the sight in my right eye was deteriorating fast, yet no one took any notice. I've seen a neurologist ,a cardiologist, a dietician/nutritionist , I've had countless blood tests, MRI scans & still no diagnosis... Now I'm totally urinary incontinent, i have no idea i need to go to the loo untill i move to stand or sit, then my bladder empties, a full bladder all at once is unstoppable & so i wear incontinence pads/pants 24/7 & tbh most of them can't handle the volume all at once... Recently i noticed that my whole body twitches occasionally, it's woken me up a few times, my feet & lower legs are red & sore looking , there's no pain but they feel like their burning from the inside out.. the really peculiar thing is apart from a feeling of my eye ball being squeezed & a dull ache like feeling in my eye socket & behind my eye, there's no pain.. on the 24th of Dec 2024, i woke up & the minute i opened my eyes i realised I'd virtually lost all sight in my right eye, all i see is light & shade, no colour, no recognisable shapes or objects, it's like someone painted something over my eye whilst i was sleeping & everything is blurry & out of focus ... Now I'm scared, I've finally realised that all these symptoms could be linked & that something's very wrong, so my Optician referred me to the Ophthalmologist & my appointments in a few hours... I have no idea what the outcome will be but in doing my research i stumbled on this site & have found it more helpful on a personal/practical level than the NHS site,
It seems that NMO is rare, often misdiagnosed & no two suffers experience it in exactly the same way.. I'm feeling so anxious right now, I'm not sure what's better having a NMO diagnosis or being told " No it's not that either" & having to start all over again... Well that's me (sorry it's so long winded, it's because I'm nervous i think), I'm 61 years old, single, live with my dog & have a very active social life especially during the warm weather when i get down the beach for at least an hour each day, it's always been "my happy place" since i moved here 40 year's ago ( on june 6th to be exact), if whatever condition i have or don't have i can't stand the thought of the beach no longer being a "safe place " for me.
Anyway, please reply if you have time, I'd love to hear about you about how your doing, how life has changed for you & anything else you want to share with me.
I quite understand though if that's not something you want to do, but as you say there's nothing like this in the UK, people are suffering & there doesn't seem to be any emotional support apart from counselling etc being offered, that's very sad
Best of luck to you, take care ...
Hey there
It's been such a long time since you wrote. Your journey sounds like a nightmare. I'm so sorry! I was bounced around by my GP and A&E for a couple of weeks (also wondering if I have bit B deficiency) but once my symptoms got serious thankfully I was taken very very seriously and immediately accepted into London's UCL neurology hospital which is the best in the UK. They kept me there for daily testing and observations for 2 months.
But then again I think the fact that I was young (35) might have been a factor. It's sad and wrong but I'm pretty sure that as we get older our health deteriorating starts to be treated as just part of life. But sight loss, neuropathic pain and sensations, issues with bladder and bowels..all of this sounds so serious. I'm so sorry you weren't taken seriously.
My symptoms flooded me all at once and became as severe as they can get withing a couple of weeks (complete paralysis below my waist, partial paralysis from waist to chest, complete bladder and feacal incontinence, horrific neuropathic pain that begun with my skin being hypersensitive (I would scream taking my socks off as if my skin was being ripped off with it) to me feeling no more normal sensations but having every neuropathic sensation you can think of (burning, stabbing, squeezing, pins and needles, electric shocks etc)
I fear sharing my experience sometimes I don't want to scare anyone still going through the motions. I seem to be one of the rare cases with zero recovery and likely no future recovery. It's been 2 years, I had plasma exchange, steroids, immuno suppressant medication and nothing (a little rerun of sensation in my torso but all that led to was more severe neuropathic pain)
I'm wondering if you'd like to share what happened after your ophthalmology appointment?
Hi there
We have quite a similar background. I'm in East London, not horrendously far from Edmonton. I used to live and work in Enfield too. And I also worked for the NHS for years and got laid off after my diagnosis (I was a CBT therapist)
See my reply to the other commenter here for a bit more with my NMO journey
If you'd like to meet up one day let me know. Hopefully we can find a way to swap contact details here in a discreet way
Good Evening ,
My name is Natasha. I am 51 years old,happily married, mother of 4. I live in North London, Edmonton. I worked for the NHS/ local government for 20years with Autistic Adults. I took the covid vaccine at the beginning of covid back in 2020. I took it 2 times after that and havent been the same since. After my job sent me for my 3rd rounds of the covid jab, i had pins and needles in my torso, stabbing back pain, extreme vomiting the loss of feeling in my right leg and temporary loss of vision in my left eye. That 2022/23. I was paid out from my job in December 2024.
I was hospitalised at Oxford John Radcliffe hospital for 4 months. I had 3 blood tramsfusions, a rituxinab that i have to get twice a year for the rest of my life. I wear an incontinent pad all the time as o cant hold my urine at all.
But through it all i give God thanks and Praise as it still can be worse. My intense physio, massages, float therapy and e exercisong has restored me tremendously. I take 12 tablets a day as well as 7 multi vitamin supplememts. I would love to connect with you
