Autoimmune Related Symptoms- Any UK Medical Specialists Out There? (Not GP's - THANKS).

[Chiara77]

Dear All,

No clue where to start or how best to explain. Long story short, I am suffering from a multitude of symptoms. GP's - unfortunately it has been a very disappointing experience for me. In the end I had to take control of my own health before my symptoms spiralled out of control. 'I had to pay for my own health.' Recently, I have had to take sick leave, due to chronic symptoms. Mind you I have been raising concerns about my health over the past years via the NHS GP system.

I suffer from the following symptoms- joint pains and aches/mobility issues, tingling sensations (hands, feet and legs), fatigue, brain fog, headaches, gluten intolerance, hypothyroidism, issues with cognitive function, intolerance to the cold/targeted areas of the body at times (especially legs) and food allergies. I am sure there are more symptoms- I may have left out. All these symptoms have increased overtime and become more chronic.

My favourite experience with GP's (with a hint of sarcasm on my part) has been the usual predictable results 'your blood tests are normal,' or even worse yet, 'it could be due to a 'mental health condition.' Alluding to the fact that 'it might all be in my head.'

I would have preferred a referral to a specialist medical professional, rather than assumptions, generalisations and medicalisation (wrong medication prescribed for undiagnosed ailments)

After paying for my own private medical tests, the NHS GP's are paying a little bit more attention. I have been referred for further specialist medical assessments with a Rheumatologist. I am trying to remain optimistic, but at the same time concerned that it will be an ongoing saga of medical professionals trying to determine the route cause of the symptoms.

I am aware that people who suffer, or experience what I am going through if the conditions are not assessed and treated properly or minimised that one's life can be shortened. I am young and so far I am feeling less hopefully of the NHS medical system.

There are many times- I have felt like just turning myself in the hospital due to chronic pain. The 'fun' thing about this condition is that I would be down the list of high priority of needing urgent condition. It is rather sad that one has to end up in an emergency before being treated, as a preventive measure (then I wondered why the politicians are complaining about the health system????)

My query is are there any medical professionals out there within NHS who specialist in this condition solely? What does it take for a someone to be considered?

It is rather scary to know that one can go unnoticed, and that there are many suffers still out there.

It is a plea on my part for anyone reading this who might know of any medical professional who specialise purely and solely on this chronic, isolating and soul destroying disease.

Nothing against NHS GPs, I just think there needs to be further studies and education for GPs; ignorance definitely does not pay but unfortunately it does cost a life. If it costs, it is worth considering in investing in chronic, fatal and long term conditions. One would assume anyway?

Sorry to go on - I needed to get a few frustrations of the medical system off my check. I do not feel it is right for me or anyone else to be excluded from a health system, which we contribute to. Nor to be excluded from private health- 'due to my health not being considered as important enough.'

[Hidden]

Hi Chiara,

Your frustration comes through in your post but as there are over 100 auto immune diseases affecting different body systems there is no one, catch all specialist.

I think that a referral to a Rheumatologist is a good start, especially if your bloods are negative and aren't showing any end organ damage ( eg liver or kidneys ).

GP's are generalists, their job is to refer on complex cases that can't be managed in general practice, there is over 7000 rare diseases unfortunately. I hope that your appt proves useful.

[Footygirl]

Chiara, have a look at my post asking how to get a successful referral to a specialist.

Keyes gave me a great link.sorry, I cant do that, idiot me. But I was like you. Armed with info and support from here I feel empowered and energised where I was down, defeated, too tired to fight anymore days ago! I feel I have a bit of control back by making a plan.

Hang in there.

You will be hugged from all over the world, and advice will pour in, especially when folks wake in the morning.

Feel free to rant all you like, we like a good rant. Most of us induldge now and then

Some more than others ahem!🤐🤐🤐🤐

Lots of love and support, most of us have been right there!

D'y'know it is almost a rite of passage for us!

Hugs, love and hang in there

⚽️

[Footygirl in reply to Footygirl]

PS tell us where you kive, someone should know a specialist, or the main office will helpXx⚽️

[Penelope-Mary in reply to Footygirl]

And I concur, also. the admin peeps from here will put you in the right direction for help in your area. ( I'm a million miles away, so only of barracking use🤗). We all feel your frustration. It's a long road ahead but as footy girl said hang in there, hugs will pour in...

[noonoo52 in reply to Penelope-Mary]

Hi Penelope-Mary, some poms won't know what Barracking means, so for those that don't it means support. But it made me smile as I have not heard in used in 35 years and it made me smile and bought back memories of my childhood as I grew up in Adelaide and barracked for Port Adelaide football club. ( small things amuse small minds) I hear you say.

All the best,

noonoox

[Penelope-Mary in reply to noonoo52]

Oh noonoo that's lovely for me to know there is an Australian connection' Go 'Adelaide Crows' ! It's the small things that do make us smile..thankfully!

All the best to you,

Penelope-Mary 🌻

Xxoo

[noonoo52 in reply to Penelope-Mary]

Hi Penelope-Mary, many moons ago I dated a young player from South Adelaide footy club as I new it back then but as a lot of young footballers with young girls they were only after one thing. We are talking 70's

It's great because we can get Aussie rules on the Uk but it use to be the likes of charlton, hawthorn etc but we get a lot more now, so still get my fix.

Take care, love noonoox

Ps miss Aus terribly.

[Penelope-Mary in reply to noonoo52]

Oh thank you for telling me that! Should you come back for a visit we could meet up! In the 70's I too dated a footy player from my area, Hawthorn! And our youngest who now lives in Chislehurst , played for Port Melbourne. He's a strapping 6'7".

Hope you're having a 'good ' day.

Penelope

🌼

[Paul_Howard Partner LUPUS UK]

Hi Chiara77,

I'm sorry to hear that you have had such negative experiences with GPs. Unfortunately many GPs are not very knowledgeable about lupus. This is primarily because they need to be able to diagnose and treat a very wide range of conditions, so don't often have enough specialist expertise. There are certainly shortfalls with the care that some offer and it can contribute to very long delays in achieving a correct diagnosis. LUPUS UK campaigns hard to raise awareness and improve understanding of the condition amongst medical professionals and last year we had a big campaign including an advert in the magazine for all Royal College of General Practitioners members.

Rheumatologists are specialists in autoimmune and musculoskeletal conditions. Hopefully the rheumatologist will be of great help in diagnosing you. Do you have an appointment through yet?

If you decide that you need to see an NHS rheumatologist who specialises in lupus, I can provide you with information about who may be closest to you, just let me know what area you live in.

If you require more information about lupus and how it is diagnosed, you can request or download one of our packs at lupusuk.org.uk/contact-us/

[Vicky88]

Hi Chiara, I know exactly how you feel having been through exactly the same thing! I even ended up in a&e three times, once was sent by my doctor... Unfortunately with these kind of problems doctors are generally clueless and will continue to do various bloods as they dont know what else to do. Trying to get a referral to a rheumo sounds the best advice but if your doctor is anything like mine it takes time! I was first referred to an infectious disease clinic which was even less helpful! I found it really insulting being give anti-sickness tablets, indigestion medicine and a referral to a dietician and phychiatrist... After seeing a rheumo privately he was convinced its fibromyalgia so I was given amitriptyline for a few months and I went research crazy to help myself! I got a referral on nhs for a rheumo but my appointment originally this month has been moved to may! Only a year since I started having serious health problems!! It is ridiculous how some people are treated and it angers me that I lost many months bedridden and scared at what was going on and frustrated why no one would help! My advice is consider your diet! Avoiding so many things and sticking to good things like fruit, nuts and ginger help massively! I also take glucosamine with vitamin c and b, tumeric and these help a lot with pain and helping my brain a bit too! Valerian also if i struggle to sleep. Also exercise! A little swim once or twice a week does wonders Don't give up on getting the right treatment, but look after yourself! I hope you get somewhere soon, and feel better!

Vicky

[Polly2Cats]

Hey I feel your pain (quite literally).

Navigating the NHS can be a nightmare and I work in it and am very familiar with it! (I'm not always proud of that fact either) I'm lucky that I have managed to get a fantastic GP who was the one who came up with the potential lupus diagnosis (though I am on long term sick (ironically from the NHS) and waiting to go elsewhere for a hospital diagnosis after having appalling local treatment). Despite that, like you, I feel frustrated and isolated. I spoke to Lupus UK last week on the phone and they gave me some fabulous advice about seeing a specialist consultant. IT IS YOUR RIGHT to ask your GP to refer you, you can ask for a second opinion and you can CHOOSE (just mention "patient choice") to go to any NHS consultant/hospital, you do not have to stay in your local NHS Trust (but you would have to pay your own transport). You should be able to see any GP in your practice if you are getting nowhere with one in particular (I know that will sound like a mountain to climb ... how about writing to them with some stuff about lupus and making a plea for better treatment, you could write to your local CCG if you aren't getting good treatment. Lupus UK also have some great leaflets on the website about getting diagnosed and preparing for your appointments. Your hospital should also have a Patient Advice and Liaison Service who can if you wish accompany you to appointments - brain fog and fatigue don't always let you get your point across well and if you don't have anyone else they should help you. On my good days, I'm having a good think about how we can get the lupus message out there to GPs and health workers - something that Lupus UK were asking me about and I've already discussed it with my GP for her thoughts. My one piece of advice to you would be - it's worth travelling to see someone who is a lupus specialist, don't agree to go to your local rheumatology service. it doesn't cost more, its just an extra phone call or mouse click for your practice. Very best of luck, hang in there

[noonoo52]

Hi Chiara, contact Lupus as Paul says and they will point you in the right direction, we have all been there. This forum has helped me so much when I was close to the edge they pulled me back. We can do the same for you, we are always about to support you, don't ever forget that.

Take care love noonoox