Do I get a diagnosis or not - if so NHS or Private. Problem is I live in Cardiff- Welsh NHS!!!!
I’m struggling to get a Lupus diagnosis. Been diagnosed with Fibro, CFS, Behcets, Raynauds & Sjorgens. Being treated with hydroquicine for becehets & suspected SLE.
I think it is Lupus & not all of the above but Rheumatologist says no due to Neg basic blood tests & no inflammation markers.
Can you recommend a Lupus specialist in the Cardiff area NHS or Private.
Plus is it worth looking for a definite diagnosis as I’m in limbo with all the other conditions as they are described as “ probable”.
Currently under Rheumatologist in UHW Cardiff - Llandough. Had to pay private to get initial diagnosis of fibromyalgia but got so much worse over a year.
Rheumatologist not doing much & has no time. GP is good but what is he authorised to do.
Please help
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Smckntsh3
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What was ******* like, from a patient point of view? He is considered a lupus expert, as he has a PhD in Systemic lupus but I met him at a meeting with Hywel DDa UHB and my Pembs Lupus Support Group and he did not make a good impression with me or our group members, but very different situation to being a patient. Would like to know what he is like. Does he listen? Does he know his stuff? Best wishes, Wendy
I didn’t find him very good. It is just how he made me feel . Always felt he wasn’t interested & made me feel I didn’t want to tell him everything cos he wasn’t interested & not very friendly a bit stuck up really . To be honest I hated seeing him & was so happy when Doctor Lawson came back. When I first started going to the Heath many years ago Dr Lawson was a junior doctor then became registrar so he new my problems from the word go & I had so much going on He left to go to the princess of Wales hospital when he became consultant. So for me i am so happy he is back. He has looked after & helped me no end. He is a very kind caring easy to talk to gentleman & I highly recommend him
Yes, my lupus group member rates him very highly, Dr Tom, as she calls him. She wishes she could still see him. She has kidney involvement and is having a transplant next February.
Anyway, it sounds like the impression you had of Dr ******, was exactly what we thought of him. Good to know my gut instinct was 100% correct.
I actually got offered a referral to Dr ******, as I complained to NHS and then Ombudsman (long story) but Dr ****** rejected it, saying he was too busy.
My private London Lupus Doctor was gobsmacked. He said he has never refused a referral. He sees only lupus patients now and he said if people are referred to him, they need his help and he would just work longer clinics etc to accommodate them etc.
From what I have heard since, I think I have had a lucky escape!
Thanks for your reply. Always good knowledge to have when people are asking for recommendations re lupus experts inside Wales.
I’ve seen many consultants over the years . Tom is one of the best. I had kidney transplant 23 years ago. He always encourages me & says u are amazing on how u keep going. U are doing it right ! Another amazing consultant if u need gynae is Nigel Davies . I could right a book on them all & the treatment I have had
I just wanted to make you aware that I have edited some of your comments to remove a name. It is against the terms of use for this website to mention names in a negative light, so I'd ask you to please be cautious of this in the future. It leaves the site and the charity at a possible risk of committing libel.
No need to worry - it's one of the reasons we're here. Everyone is just helping each other out. I have no objections to sharing experiences and concerns about specific clinicians, but it is best done in a private message.
It's not a problem Smckntsh3 . I'll take a look at your post. I'd prefer that initials aren't used either as rheumatology is a small world and the consultant could still be easily identifiable in some cases.
Hi, he’s at Cardiff but not sure how much consulting he’s doing now as he’s dean of the medical school now I think but could try getting a referral to their rheumy department and requesting him. He is very lovely and highly recommended x
I have been campaigning about Welsh lupus patients lack of expert care for 3 years now, from Pembrokeshire. Lupus care here is truly horrific. I have posted many times and just finished a post now, where a private appointment yesterday with an Orthopaedic has highlighted another area where I have been totally let down by the NHS here.
I have heard Dr Ceril Rhys - Dillon (lady) is good, Goggle her.
Also, I run a Lupus Support Group and one of my members was previously under Dr Tom Watson and she rates him very highly, but he's left the hospital she is seen at now.
I have been going to London Lupus Centre, Tooley Street, London Bridge since April 2017. 5th appointment next week. It's costly, because trains from Pembs to London and the times of appointments etc mean, I do an over night stay. I think I couldn't cope with up and back in one day. It's exhausting.
BUT, I wish I had found it earlier!
I was diagnosed with SCLE here by local doctors and I knew it was wrong. I was refused a referral out of area and wasn't allowed to one of the Centres of Excellence - all of which are in England! Why should welsh lupus patients be treated like 2nd class citizens of the UK and be denied expert care that English NHS patients can access. In Wales we do not have the right to a second opinion and you cannot chose who you receive your care from. English patients have those rights. It's not for the good of the patient here. It's all money. The Welsh NHS have none.
I see Dr Kaul in London. He wasn't my first choice but the secretary told me he was good and I thank my lucky stars that she did recommend him and I went with her on that. He is amazing. Others here see him too.
From memory he is £230 for the first appointment, which is an hour long. £205 for 30 minutes thereafter. It is amazing how much ground you can cover with an expert though!!! They just know the answers. I learnt more in my 1st hour with him, than I had in the previous 4 years locally.
If you have any questions, I am happy to help.
Also, there is support group up and running now, with Dalila. If you are interested ask Paul Howard at LUPUS UK or find the post here, from this week. Meeting in November.
Thank you girls - I just rang Nuffield Cardiff Bay & they suggested a Dr Jim Martin - who they say specialises in Lupus. £240 for an hour.
Do u think I would be better off going to London privately.
My only concern is - what if London have to do bloods or other investigations that I then cannot afford. I’ve heard blood tests can amount to thousands & I do not have that kind of money.
I just feel so stuck - I’m being treated for SLE - have the symptoms but no diagnosis.
I feel like I’m a hypochondriac &
Wanting to be ill - which is not the case - I just want to know what is wrong with me.
My gp is fab but I’m unsure what he can diagnose or prescribe or what bloods he can authorise to determine what’s going on.
Thanks guys so much for your support - it means a lot
You are correct to be concerned about the cost of tests. You might want to find out upfront if your GP would be willing to run the tests ordered by the rheumatologist at the specialty center in London.
It sounds like your tests are inconclusive. That is common. The question is whether you see the rheumatologist with your records in hand or whether you give them free rein to order what they deem necessary. There is a pretty standard set of rheumatologic tests, so I think they would have all been done on the NHS. They are very expensive.
As Paul Howard mentioned in a previous post, another rheumatologist may not be able to diagnose you more specifically at this time. They may have a different way of describing your illness. But unless you have clear-cut lupus symptoms and labs and meet classification criteria they do not like to diagnose lupus.
It is not the diagnosis that determines treatment as much as your symptoms. You might want to have a goal of improving your functioning, not simply getting a specific diagnosis. In many cases the diagnosis is an opinion, not a fact.
Remember you do have very real and significant diagnoses. Sjogren’s and Bechets and probable lupus are serious. If you develop organ threatening symptoms is usually when they move to the immunosuppressants. But they come with inevitable side effects. This is where the art of medicine comes in. You may get another opinion as to whether you should be given low dose steroids or DMRDs. My doctors keep me off them because in my case it is not worth the risk.
With your Bechets, you may qualify for a referral to a specialist. If you message me I will put you in contact with a woman - a nurse, in fact - with Bechets who knows those regulations in the UK inside out. Bechets is far rarer than lupus, so you have that in your favor.
I have never heard of Dr Jim Martin. Ask LUPUS UK. They have their own criteria for giving someone the title Lupus Expert. It includes if they have worked or trained at a Centre of Excellence, whether they have completed additional qualifications in lupus or if they have carried out research into lupus. Oh and if they have links to support groups as well. Like I said I have never heard of Dr Jim Martin. My gut feeling is he isn't a lupus expert, as I have asked LUPUS UK enough times about these issues. Most NHS Rheumies are experts in Rheumatoid Arthritis.
I saw Dr Martin Bevan for my first rheumy appointment in Sancta Maria Hospital Swansea and was assured that he knew lupus.....He told me I had SCLE and then local NHS Rheumy just followed this and wouldn't waiver from it. I had SLE and it took me going to London to get the right diagnosis. I now tell people not to see Dr Martin Bevan for lupus. I have no doubt he is an amazing rheumy and knows his stuff - but his stuff is not lupus.
Personally, after my battle locally, I would recommend London Lupus Centre every time.
A full set of lupus bloods is about £600 there. But I have never had to pay for extras. Just my appointment fees, because I got a full copy of my hospital and GP notes myself - which is free now, under the Data Protection Act and they cannot refuse your request, it is your right. I then get the GP receptionist to print off my blood tests etc to take with me to each appointment in London. So my Dr K has never needed extra blood tests. However, I cannot guarantee that would be the same for you. It depends on what bloods you have had done locally and whether they have covered all the tests that London would need.
I think Llandough just done the bloods to see the basic lupus test which was Neg & at the time my inflammation markers were not up.
But on reading Jimbo recent thread there are a whole lot of bloods to be completed that I haven’t had done & I can’t understand why these welsh Rheumatologist don’t do it.
I have most of the symptoms of lupus. A diagnosis of Fibro & behcets & sjogens - But I’m still getting worse & just feel fobed off.
Nothing is concrete & all is probable.
I’m a police officer for SWP & they are trying to get reports from consultant in order for how they can progress with my employment
& they get no response or it’s so vague.
I just feel so stuck & like I’m making it all up. But it’s not the pain fatigue headache itchy rash weight loss is real. I’ve aged about 30 years - I’m so not the person I was even a year ago
I really feel your pain and frustration. I live in Tredegar and frankly the treatment I have received has been patchy and at times sub standard. I was “ fortunate” to receive a diagnosis of Lupus, Raynauds, APS, Underactive Thyroid, Pernicious Anaemia very quickly after becoming very ill. I then felt such lack of interest by the Rheumatologist Dr A ( he literally handed me an ARC leaflet on Lupus and asked me to sign a disclaimer for the possible side effects of the Hydroxychloroquine . I was referred to Hereford under Dr R. He was thorough but dismissed the Lupus diagnosis and diagnosed Bechets and Fibromyalgia. He took me off the Hydroxychloroquine and within two months I became ill. To my horror I found that my lymph nodes around my heart and lungs were swollen and within weeks I was seeing an Oncologist and Haematologist and told I had Low Grade Lymphoma. Thankfully my GP agreed to referral to St Thomas’s where I had a definitive diagnosis of Lupus from Dr S They put me back on the Hydroxychloroquine. Two months later I was discharged from Haematology and Oncology. Dr R in Hereford was so furious that I had questioned his diagnosis that he wrote a letter of complaint to St Thomas’s. When I went for my three month check up in London the same Dr S changed my diagnosis to UCTD and discharged me. I was so dishearten I refused to see a Rheumatologist for two years. Then I became ill again. I was referred to Dr L in Nevill Hall. He made it clear that he was not impressed with my changing of Rheumatologists but said that he thought I had Bechets, APS , Fibromyalgia and that Lupus was in remission. He left suddenly and I was sent to Dr C in the Royal Gwent in Newport. He upped my Hydroxychloroquine to 600 mg daily. I developed macular oedema and was referred back to Dr C who informed me that he had a few people like me on his books who were always ill and there was never anything found. He said my brain had imagined the oedema and peripheral sight loss as an hysterical overreaction to people on this site expressing concern over the dosage. He said I do not have Lupus, Bechets, APS and he took me off the Hydroxychloroquine altogether. He said I had Fibromyalgia whether I liked it or not. Eight weeks later on holiday I became very sick. My legs swelled and were covered in a raw, burned type rash that covered both legs and feet and extended up to my thighs , buttocks and hips. Local GP’s did blood tests and put me on Antibiotics and bed rest. The nurse that took my bloods said you have SLE because my husband does and has a rash just like that. We returned home early. My GP prescribed more antibiotics and blood tests. My CRP is 41 my ANA is highly positive but they all failed to collect C3 and C4 which I am now having taken next week. I can really appreciate your lack of faith in your Consultants because I too am floundering. If I could afford it I would definitely go back to London. I wish you the very best of luck. It is truly awful to be caught in this inconsistent, seemingly uncaring situation x
Thank you CecilyParsley - I’m so sorry with the way you feel & how you have been treated. But you just know your body.
I too am taking hydroquixine - 200 mg per day. I was on 400 at first but at 8 stone my body couldn’t tolerate it as I couldn’t eat felt week & slept constantly.
I just don’t seem to be getting better.
I went to Turkey in July & when I came home I had a massive flare up. And had terrible rashes & itchy skin out there. Thought maybe I had been bitten by something.
Then went to Greece in September & the same again. My skin & body cannot tolerate the sun or heat.
How do I get transferred to another Rheumatologist within welsh NHS - uhw hospital. I believe Tom Lawson & Sharon Jones work alongside each other bit I won’t to jump from Jones to Lawson as he seems more up to date with lupus.
It is dreadful that you cannot get a good level of care either. My GP wrote a letter of complaint about my first Rheumatologist Dr A but then I had to be seen in Hereford. I really do not know how you can transfer within a Local Authority unless it’s a different hospital but there must be a way. I hope someone can advise you. Good luck with it x
I’m in Scotland and have Sjögren’s, under-active thyroid and overlap CTD - diagnosed by a great rheumatologist I saw privately in Swindon last month.
Despite her conviction that I should be seen and monitored regularly for Sjogrens with overlap I’m now back to the feeling that here no one cares.
And I’m actually fearful, from what I increasingly read here in these posts, that a fair few rheumatologists in the devolved parts of UK actually resent us seeing doctors in London and surrounding areas.
So I’m dreading my forthcoming reviews with neurology and rheumatology. I think they will be hostile where I feel they should be pleased that I have trekked to Swindon and back and by doing so made their jobs easier for them in gathering expertise.
Why do some specialists have such cracking egos when you can be sure, if they were in our shoes, they would be fighting tooth and nail for answers and the best treatments available to them?!
I agree it is very much frowned upon that you dare to get a second opinion with many Consultants which is crazy. I do hope your Consultants consider the diagnoses of your Consultant in Swindon.Good luck xx
Thanks CP. I really don’t expect them to as so far they haven’t responded to my request to be kept on and monitored and nor have I a chance in hell in seeing the only Sjögren’s expert in Scotland, due to her working under a different healthboard to mine.
My only option is to relocate again or just hope that Dr P’s rediagnosis and prognosis was wrong. But I think she is too good a doctor for this to be the case.
We really shouldn’t have to fight to be believed and taken seriously like this should we? It’s bad enough that our bodies are in a state of civil war without the added burden of devolved politics! So I just wanted to add my voice of solidarity and say it’s not just in Wales where this is happening xx
I know that through FB friends in Glasgow, not autoimmune related but just differences in diagnosis and treatment across the board really. I have no faith in any of the doctors I have currently, with the exception of my Orthapaedic Surgeon.It feels unsafe. My husband says I look like death and that I should go back to the GP but in the past two weeks one GP said “ this is too much” and walked out, she came back but I was running a high fever, could hardly stand let alone walk and had a virulent red rash from my toes to my hips. The second GP said I don’t know what it is so you must see your own GP. When I rang I was told no appointments for three weeks. Then I get a call to say they were extremely concerned about my bloods so I was fitted in with a local GP who said I know nothing about Lupus, what do you think it is? She arranged to take more bloods. When I got there she had not asked them to test for ANA. She then rang me and said the Rheumatologists letter said if I became symptomatic again she should test for C3 and C4 so I have to go back next week for yet more bloods. It is just not good enough and I know it truly sounds pathetic but I have no fight left. We should not have to accept this but what is the alternative? Of course a Lotto win would help..chauffeur driven all the way to London Bridge. I can but dream ❤️
Oh heck CP your situation sounds as diabolical as mine GP and rheumatology wise! I too have lost faith or readiness to fight. How could they walk out on you with a rash and a fever? They should have been calling an ambulance if they couldn’t deal with it themselves - what’s the world coming to???! And if your bloods are that off whack then they should be phoning rheumatology to get you seen urgently surely?
I see dermatology again tomorrow for precancer in my lip which is spreading. Dr Price suggested that I ask the dermatology professor if he or she would be willing to take over monitoring my autoimmune diseases and get me back on immunesuppression under their watch due to the pre-cancer. I can’t see this appealing to them somehow though - but I’m still so sadly hoping I might get away from CTD clinic and neurology and find some decent doctors to oversee my care.
The dermatology clinic here is really good but their priority is skin cancer. It comes to something when a rheumatology/ CTD clinic discharge patients with a confirmed and very active rheumatic disease. Yet “functional“ overlay and “chronic illness“ are the nonsense terms now littering my clinical letters. Whereas dermatology letters say “overlap CTD” and “her skin disease is autoimmune”.
It is so dreadful. I understand that too. When the gastroenterologist diagnosed pernicious anaemia and an unexplained ulceration of my digestive track he noticed my rash and spasticity in my hands and felt that with the choking I should be investigated for Sarcoidosis. My Rheumatologist stated that I had enough going on and he would concentrate on what I had not what I might have. Appalling treatment. I wish you the very best of luck with dermatology. You must be scared and anxious about the pre cancer in your lips. Please let me know how you get on.I understand about the nonsense terminology as I have things like “I know Mrs A wants a diagnosis of Lupus and will be disappointed”, “This patient has read on the internet about APS and now believes she has it”, “This woman was influenced by social media reports on Hydroxychloroquine and imagined a lack of peripheral vision and oedema out of hysteria”. No wonder I am now being treated as if I am a raving hypochondriac. Xx
Hi. I also live in Tredegar and have been trying to get a firm diagnosis for over two years. I've rarely seen the same GP twice and they never seem able to join the dots.
Saw Dr C privately in 2018. He diagnosed seronegative autoimmune disease, gave me a steroid injection, bloods, etc.
Went back on NHS list. Changed his mind and discharged me. I've been in agony ever since. I got a referral for a second opinion after fighting my corner with various GPs after a year.
I'm still waiting 10 months later. Awful. I rang the booking office today and was told I'll be waiting at least another 6-8 weeks. X
My commiserations for having Dr C. Firstly he doubled my Hydroxychloroquine which caused macular oedema so after ten years on it I had to stop it. Then because my GP and Optician were concerned about such erratic overprescribing he told me I was suffering hysteria and Fibro. He wanted to discharge me but my GP complained so I was transferred to yet another Rheumy in Ystrad Mynach who said I had mild UCTD. Two months on another new Rheumy phoned me and I have to say he gave me hope for the first time in years. I will pm you his name and maybe you can request that you are seen by him xx
Sorry I haven't been posting much. Had a horrible flare-up which decided to stop two weeks before my Rheumatology appointment on Tuesday, so when I saw the new consultant there wasn't much in the way of swelling etc to see. Typical.
She said she didn't have time to look at my photos but would rather talk to me instead.
She was a nice lady consultant, unlike the last person I saw, but difficult to communicate as both wearing masks.
She did give me a good examination but again, dismissed my toenail dystrophy, said my rashes weren't psoriasis, and has said I have fibromyalgia. I know nothing about this but have now looked it up and my symptoms don't match this at all.
She's looked at all my symptoms separately, saying I have plantar fascitis, Morton's neuromas, osteoarthritis, tennis elbow, possible low thyroid and DDD. I'm exhausted by it all now. She's put me in for ultrasounds of my feet but says there's a long wait now. Told me my gastric reflux is caused by Naproxen so to stop taking it, ( I already have, 6 weeks ago - no improvement),
Dry eye syndrome diagnosed by optician is due to my age, she says, ( 62).
I've waited almost a year for this second opinion and set such store on being diagnosed and treated quickly. I've been back and fore with this since September 2018 but have had symptoms for much longer. She did take more bloods, but mine never show any inflammation, so I think I'm going to be at stalemate again.
After restrictions are lifted I'll think about the private sector.
Oh I am very sorry. I know only too well how anxious it is before you see someone new because they have read the often erroneous notes from the previous Consultant. I had just last year diagnoses of Lupus ? Bechets? Fibro? from one hedging his bets, Fibro and hysteria from Dr C. MCTD from the on call Rheumatologist, UCTD from the next one and definitely not Fibro. I have not even met my new Rheumatologist but he seems interested and acknowledged that my situation has not been helped by the lack of consensus. I hope that you can ask for a second opinion and referral to the pain clinic to help with your pain xx
She had read Dr C's notes because she talked about my ' pins and needles' which I'd not mentioned to her. This was Dr C's phrase he used when I tried to describe the kind of ' Chinese burn' pain I get in my joints. As soon as she said that phrase I knew I wouldn't get anywhere. It's difficult in Wales where there are so few rheumies and they all know each other. I never see the same GP twice either and they don't know me - lots of new doctors there and I hardly ever went to the surgery before all this started. I feel there's no-one to fight my corner.
Thanks so much for your kind words. Hope you aren't in too much pain with your own illnesses. Xxxx
I totally agree. I have never met such an arrogant and ignorant Doctor. He was sneering at me as I cried. The very thought of what he has written in my notes fills me with dread, the letters and emails were shocking. My GP’s were shaking their heads at how rude he was about me and in response to their queries. I have heard from others that there are now two young Rheumatologists and both are both attentive and thorough so it gives me hope. All three people have made complaints previously, one suing for medical negligence. None have Lupus but were all treated callously with the standard phrase “if you get sick you will prove me wrong“. Maybe the new Grange Hospital will improve the standard? We can only hope. I am nit bad pain wise due to the steroids but still breathless and severely fatigued. I am off for bloods today so hopefully getting out of the house for a while xxx
I'm afraid I don't have any recommendations of lupus specialists in the Cardiff area, but I see you've had some good comments below.
I just wanted to say that the Cardiff Lupus Group has a meeting coming up on 16th November 2019. You can find all the details here - healthunlocked.com/lupusuk/...
It could be an opportunity to chat with other people from the area and see if they have any recommendations.
I feel your pain. I was diagnosed with lupus after many years in Cambridge, when I was put on hydroxychloroquine which transformed my life for the better. I then moved to wales with consultants letters and blood results. At Aneuran Bevan I saw an NHS rheumatologist who was unable to help me when I had a flare. Or see me or have nurses answer the specialist nurses phone line. It’s normally treated by a short course of steroids which works a treat. In desperation I went private and was diagnosed with fibromyalgia and offered Occupational therapy, meditation anti depressants and counselling. I did point out I’m only depressed when people don’t listen to me and I’m having a flare! He insisted that no treatment was needed when I have a flare. I jumped through all the hoops and saw another private specialist, who read the letter from the previous misogynist and said I had fibromyalgia as well!
I have to be seen at haemophilia clinic, another story but the consultant listened to my tale of woe and recommended Dr Sharon Jones at Cardiff, so another private consultation. I documented all my many ailments for the past 40 included blood results and she actually listened to me!
So back on hydroxychloroquinne and steroids for flares! She was an absolute delight, because she actually listened to me. So I’m seen on the NHS again thank goodness as I’ve had to pay privately to get a consultant to listen.
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