So as you know I see an ophthalmologist who said she would see me and daughter and had to chase and didnt see her again but someone who did ice test. myasthenia suspected at this point with problems I dont have a clue but have absolutely now zero trust.
I have had more breathing problems which come and go but chased when I will be seen again following positive ice test. I just received email telling me June next year a 48 week wait.
my heart is racing and im doing everything to not cry.
WARNING to all. do not complain against the nhs. I have been through hell since, many of you will have seen my posts and some pictorial evidence and heard how I feel. I suffered horrendous symptoms unseen and neglected on reporting in pandemic and now this.
There in any situation is no explanation for this even health crisis.
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stiff19
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I know you have a useless GP, but I wonder if you could ask to speak to your optician. Explain your history - again - and hopefully she’ll be able to expedite the ophthalmology appointment.
It’s worth a try…..
BUT you can get through this! You’ve proven to be one strong lady and you can do it 🤗🤗🤗😘😘😘
I’m so sorry Stiff, you are such an inspiration to everyone on this forum and it’s heartbreaking to hear you are having such a horrible time. I’m sorry you haven’t gotten the support you needed, and that the complaint process was so awful, and that you now have to wait nearly a year for your next appt! It’s just ridiculous, isn’t it?
I have no suggestions treatment-wise, only to be kind to yourself at the moment, as you’ve been through such a dreadful time. Maybe do some nice things: snuggle under a blanket, cuddle a pet if you have one, light a candle, watch a TV show that makes you laugh. These days are horrible, and yet, somehow you are still here, so don’t forget you have survived bad days before and somehow you will get through this one too. 🌻🌈💚
so sorry to hear this. My friend in Aberdeen is having a nightmare of a time for complaining and they are trying to now say he has psych problems. Gaslighting him and worse.
So sorry for what you are going through. Be kind to yourself, you’re been through so much and now need to focus on you. Do whatever makes you smile, or cry, maybe a film you can watch with your daughter, have some popcorn and relax, forget about your worries for a while.
Thankyou for all the kind replies. I think I will try megs53 suggestion but 🤷♀️ my opticians which is supersavers have sent the referral 3 times to gp and they have each time denied sending it. I have just arranged with them to go pick up a copy of referral and I will hand deliver to gp as this referral was for eye findings and not as referral from rheumatology of my request.
I just dont know anymore, if steroids were supposed to aid diagnosis yet nothing since, the skin is the big difference they made but all else continues in one way or another and I will argue it is not fibro until the cows come home. my right arm and left leg are getting skinnier too and its worrisome given family health.
Re my poor daughter, colour vision loss not dealt with.It is now lesser but fear it was neglected optic neuritis 🤷♀️as suspected by optician. in past year has had 3 episodes which include vision and eye problems of red veins and mental change out of character and at same time severe back pain and sciatica and lots of inflammation and weirdly hiccups.
Years of severe heart burn , and regurgitating food and belching better than a builder and constantly, finally after years of gaviscon which she stopped taking as did absolutely nothing has been treated with omezaropole and helped.
lots of rashes and pin prick red dots on arms and stretch marks appearing and disappearing and awful menstruation , and a blood test revealing anaemia and no autoimmune. the iron tablets made her feel bad so we treat with diet and has never had a repeat blood test and told nothing wrong just growing pains.
Over years seen ophthalmologists and not the neuro ophthalmologist but once when who ordered brain mri, but didnt speak of symptoms or anything else just asked how colour vision was and would see after scan.gp surgery said brain scan fine, ophthalmologist said not been read. neuro ophthalmologist on long term leave but stand in booked future appointment and gave her dry eye treatment and said if she gets that bad again go to a and e. The ophthalmologist we see when I went and said shed see us both is nowhere to be found so a passing one I suspect, ive looked her up and nothing only in Dubai with her name, not listed at local hospital and where I see her they said she's not based anywhere just pops in, hence I guess why im left to this rubbish of not being seen again.
Recent paediatrics appointment, third one they said she has no arthritis, no swelling, we mentioned she gets like yellowing on hands and elbows ,it looks like old bruising but without a bruise before, her knuckles go red and following on doctor at the walk in hospital suggesting she has arthritis we mentioned this but they said no, no signs of it and no signs of autoimmune in bloods.We mentioned her very sensitive skin to products, had unknown allergic reaction when younger to antibiotic and as me ,always been unwell behind being well if you can get what I mean.we tried to get across daughters problems but just talked over mostly though did listen a bit more. tried to explain menstruation problems, behaviour etc but hard to tell if listening or not.she said she Is not sure if fits criteria 😡 for Eds but as hyper mobile it would be the same and to just not over do it and learn she needs rest. we explained her falls and back problems dizziness on standing and fluttering in chest she said she would get hear heart checked but dont know if she will as had nothing yet and that when swelling occurs in feet to contact them for X-ray. then last week we got appointment to go for ultrasound.
She found it very hard to confide in me one day that she thinks she has adhd. I wonder if she does 🤷♀️ anxiety is huge she ate toilet paper as a kid, she eats ice, impulsive distracted ,focusing, many things,I can see why she thinks it maybe even autistic.
Been to walk in hospital with daughter a few times now this year, recently after falling as ankles gave way one or other differing times and knee. she has no energy, fatigued and is so young and finds it all mentally challenging and worse she worries about me so im exhausted from brave facing mine and overstretching myself so as not to worry her too. We bought her hand and ankle supports despite them saying nothing wrong as she felt they helped when bad.
My daughter did art last year at college, decided it's not for her and has chosen catering as loves cooking and wants to do cake decorating. I got worried as on leaving college after art and being more active was when things got worse. art I guess involved so much sitting.
This morning we went for ultrasound on hands knees and feet. Her hands are showing fluids and blood, her knee and ankles though the ankles worse than hands and yet hands showing worse ,we were so surprised at that. her tendons are showing as thick and bony growth parts.the radiologist was the first pleasant person we've seen for ages and explained what she was seeing.
For my daughter I hope this moves things forward as part of a picture, she was relieved rather than upset and I for her. The radiologist said she will send this to paediatrician today but said there is clear arthritis and it was seen as soon as she put the doppler on her.
I am upset for daughter but so pleased in a way as we've said for years how similar some of what she suffers is as mine and I just glad one of us can get help.
thankyou all for your support, im glad I refrained from complaining about daughters care though its taken two years to get looked at.
It's the way things are in this health trust it's all appalling . I wonder why so many people are undiagnosed but then health service is unequal so not surprising. thankyou 🙏🤗😘🤝🥰
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I need to get this off my chest then I can sleep! 
Now I am cross! Why don't doctors communicate with patients??!
i dont know what to do
Gp referral to Specialist in next count (he is nearest) how do i it successfully?
I neeed your guys advice !! ❤️ 
