My 21 year old daughter has been ill for years and has seen a specialist who said she has hypermobility, this does not account for all her other symptoms. And when she went to the specialist with a list of everything a couple of years ago he said put that list away and just tell me. She was out of the door in minutes they just did not listen. Now she has been taken off the list. Other symptoms have started and after another visit to our local doctor, he said he is sure she has either Lupus or Inflamatory Arthritis, but until they show up on blood tests there is nothing he can do. He has agreed to do blood tests yearly! While my daughter is struggling to get on with her life, as she has no diagnosis. She has tried 3 jobs and just cannot manage to work. She started a job last week and is going to have to leave, she is totally exhausted and has pains all over, her knees have swelled and she feels like she has the flu coming on, which always happens. How do we get to see a private Doctor? or get a 2nd opinion? any help much appreciated this is ruining my daughters life as no one believes her when she has no diagnosis really.
How do you find a private Doctor to diagnose you ... - LUPUS UK
Firstly find a Rheumatologist, enquire of his secretary about specialities and fees then ask your GP to wriite a letter of referral. There shouldn't be any problems with this but she can't be seen without one. The Lupus Clinic at St. Thomas's in London used to publish an on-line list of UK specialists, which I can't presently find on their website ... maybe removed or perhaps some other forum member has the link. Any Consultant working at St. Thomas's would be a good choice depending how close to London you live/are prepared to travel. There are also various other Lupus Clinics which you can find online. Hope that helps!
Thank you very much for that. Unfortunately we live about 5/6 hours from London by train as I don't drive but I will certainly keep that in mind or have a look at one nearer to us to go private. I am just worried when we have to go to our own Dr he will say we are wasting out time as she has had all the tests, but no one ever listens to all her symptoms. And she is getting worse she has had to quit her job today after only a week.. Thank you again Lorraine
Hi Lorraine when I first went down to London from North Wales they were not very happy because of funding but stuck with it and am glad I did. They have a sleep over room if you come long distance and a small charge of about £30.00 so you do t have to rush to your appointment the next morning as some times it was the first one.feel free to ask me about it if I can help I would gladly x
He may well be irritated Lorraine but it's your right to consult and be treated by whomever you like. Take it from someone who was told for 9 long years that all my symptoms were imagined that you may well only get a diagnosis by travelling out of area as doctors - like other professionals - tend to socialise with and know one another fairly well in local groups. I think you'll also find the Consultant you choose to see privately will have plenty of time to llisten. In case you're not aware, one can also usually continue to see a Consultant out of area via the NHS if he or she has an NHS practice and is willing to accept you on their list. Don't give up til you get some answers! Good luck!
My daughter has been told the same thing for years too with family and friends thinking there is nothing wrong with her but they dont see her day to day. I will try and get an apt for her with a specialist away from Barrow and hope he does keep her on within the NHS like you say could happen. Thank you
Here is the link to finding a lupus specialist
I think you may be entitled to a second opinion on the nhs so it could be worthwhile researching this, too. Perhaps you could ask for a second opinion with one of the specialists, if there's one local to you and your daughter.
Good luck x
Hi and thank you I will have a look at the link now. The head of our NHS hospital has refused to see her again even though she never saw him and has so many more symptoms than last year when she saw a stand in dr there! So maybe we will have to look a bit further. Thank you
hi i would get a second opinion , i did and then i was discharged by him and told my g.p. can continue prescribing me my meds, anyway do wot i did go on google , find ur local hospital , mines colchester so basically u then go on to the hospital website and find consultants in rheumatology it will then give you the names and qualifications , then you take that name to you gp and you refuse to leave the office until a referral letter has been done , tell them(nicely) they may be qualified General practicitioner but your daughter has a right to ask for a second opinion and to choose a rheumatologist it may take longer to see the specified one but sadly its the system, i did this on the advise of PALS you can google ur local one of your drs surgery has there number , if you ask the receptionist for the number watch the facial expression change , or you could speak to your practise manager and ask to see a different gp and request your daughters bloods be taken to , shes lucky she has you , well done mum , im a mum to a 16 year old lad im sooo paranoid that he has lupus because i have it , although its not proven it is somewhere in the genes.lastly theres a brillian facebook page for lupus even though she hasnt got her diagnoses yet there are ppl from all walks of life young and old that share our symptons it kinda makes you not feel alone hope ive helped
Thank you this was very helpful. Daughter has had her bloods taken 2 months ago and our dr said he will do the yearly. But it could take years for them to pick up Lupus as he does think that is what she has, but with no diagnosis its hard with work etc no one understands and wonders why she feels like this. You have helped thank you Lorraine
Try making an appointment at the London Lupus hospital. I took a day trip down there a few years ago to see a consultant. Lupus specialists, they know what they are doing. I have no faith in my GP or consultant. Worth the money. I did it in a day trip and will be ringing again this week for a consultation as my NHS care is appalling. Research as much as you can and try Molly's fund finding Lupus on Facebook for great advice and also there is a new book coming out by a Doctor Donald Thomas called The Lupus Encyclopedia. Don't get it off Amazon. Very expensive. If you find the link to Molly's fund, check out Dr Thomas' webinar on You Tube about the secrets to self help and like his Encyclopedia page, scroll down through all the articles and you will find info to get a UK discount on the book to get it for £12.60. Don't hesitate to message me and if I can help I will. My experience of NHS care of Lupus has also been very poor. Best wishes. Jayne. X
Thank you our Dr has now given us a private apt but not for a Lupus specialist! We will see what he has to say. I know we are just thinking it is Lupus as she has a lot of the symptoms. Lorraine
Just a question,
I want to go private to the lupus clinic in London.
I live in Kent
When I asked about going to a certain consultant
In London she sent me a form only listing Canterbury, Margate, Ashford
That was it. She went oh I don't know we can do that.
Also I wanted a second opinion as the consultant said I had fibromyalgia
But talking with lupus UK who I have to say have been brilliant said I have all the symptoms of Lupus.
And should be seen by Dr Hughes.. did you pay private ? I have £300 Would this cover this ?
As previous advice, if your not already under the rheumatology department ask to be referred as they also deal with hyper mobility this is another condition that has lots of the same symptoms as auto immune diseases. I have researched in depth and there are connections between all the auto immune diseases and hyper mobility. I was diagnosed with hyper mobility syndrome and now have RA, lupus, sjgrens, sticky blood raynaulds and coeliac . Sounds terrible but I'm managing. My daughter is very hyper mobile and has joint pain fatigue etc and is ongoing with the same consultant as me, he continues to take her bloods on a regular basis as he feels she may end up with lupus and now my grand daughter has just been to see him (at his request) as she too has hyper mobility syndrome and is beginning her teens and he thinks that her hormones may change her strengths and weaknesses and wants to keep a check on her.
Unfortunately there are no quick fixes with any of this and you just have to keep going back until someone takes notice and begins to help. If I hadn't gone with my daughter (31 years) the gp would still be trying to say its depression! She has since change surgery and getting the right help.
Stay strong and know you're doing the right thing. It's not fun seeing your children struggle. I hope you get the right help soon.
Thank you so much this is how my daughter is she is farigued and has so much joint pains and other pains, things keep getting added to it. You have a lot going on and you are managing which is good. It is strange but I myself in the last year have started with joint pains which have got worse the last couple of months! I couldn't walk one night and had to go to A & E so you never know I could have passed something down to her I have always had a clicking hip when I move, and the last 5 years have had tennis elbow twice, frozen shoulder twice and cannot lift or I get pains in my arms, I have a sore shoulder yet again for the last 3 months which he says is tendonitis now. My daughter does have a private apt now to see someone hope he is better than the others we have seen. Thank you Lorraine
Hi Lorraine an update on my daughters progress, she has had lots of tests and they have come up with hyper mobility syndrome which she now has splints for her hands and feet and coeliac which has had a big impact on her life as this involves getting rid of lots of food in her diet but she is already starting to feel 'better'. This has lots of symptoms, the same as lupus. we noticed that she also now has on her records mother has lupus, which is great as they when monitoring her bloods they will continue to assess her. And to think the original Gp wanted to say it was depression!
It is a long road but never give up hope.
Good luck with the doc that you are going to see, even if it's not lupus it has to be something causing the problem. Let us know how it goes.xx
Our GP too at first came up with depression amongst other things like Anxiety but then other things started to appear and show up. Her diagnosis from a specialist she went to was hypermobility but people see this as nothing more than double jointed when you tell them.
Thank you will continue to see what comes up, hope this new Dr in Blackpool can help x
I'm not sure how useful this is, but myself and my sister have ehlers danlos syndrome and my sister is disabled by this. If the drs say hypermobility, why don't you ask to be referred to dr Graham's clinic at UCHL (only specialist in the country) for an assessment - they are amazing there and if your daughter has lupus or something else going on secondary to joint hypermobility, I believe they will find it. It might be a better route than trying to convince drs of a diagnosis, and if you are wrong the eds clinic will find what is going on. I've been there and my sister has been there and they were phenomenal. They look around the whole picture.
Thank you that sounds like the place she needs to go to. I will see what this private dr says she has been referred to and then look into that if nothing comes of this. Lorraine
Hello. Sorry to hear that you are struggling to get help and a diagnosis for your daughter's illness. It must be so frustrating for you as a Mum. When we realised that I probably had Lupus, I got a referral letter from my GP and saw a Rheumatologist privately. I did have to drive an hour to see him. But he made the diagnosis there and then and did my first prescription for hydroxychloroquine. My GP also got me on the NHS waiting list, at the same time. It was just 3 weeks to see the Rheumatologist privately and 5 months for the NHS appointment. The NHS Rheumatologist has been far more thorough and ordered a whole load of tests and investigations (xrays, ECHO, ECG, 13 bloods, 3 urine tests, lung function tests etc), which is great, as I feel that I can trust her and she is being thorough. But that diagnosis and the medication with the private doctor couldn't come soon enough, I was so ill and so low. I did however have a positive ANA and positive anti-RO test to back up all of the other symptoms I had. You can look at Nuffield Hospitals web sites or Spire hospitals, they are both private. They will list the Rheumatologists at your nearest private hospitals. Their qualifications and specialisms are detailed. Some may have specific interest in Lupus or auto-immune conditions. You can pick the best one for your daughter. That 1st private appointment was £180 and any follow up would have been £110. But he gave me the hydroxy and that helped turn things around. I didn't see him for a follow up. I then saw the NHS one. I could go back to the private one at any time, if I felt I needed to. One thing I did do, was the blood tests I took with me - I'd had them done by my GP and got them to print the results out. I'm not sure how much he would have charged for the bloods to be done privately. I hope the information you get here helps and wish your daughter the very best. Wendy
Hi Thank you for all the information. My Dr has now given her an apt at Blackpool hospital to see a dr privately. But I am not sure he is the right one, he has taken some of her other symptoms and sent her to a dr who specialises in hormone problems. But will see what he comes up with, we still think she has Lupus. Lorraine
Like you I have many symptoms of Lupus I went to see a rheumatologist waste of space he was. I know a young girl who also has Lupus she see the same rheumatologist he has her in tears every time. If you Google Nuffield hospital it will give you your nearest hospital you can also read about the Doctors who work there what they do qualifications ect
Thank you I will
Hi, Your daughters doctor could be right as there are conditions that cause hypermobility that cause symptoms that are very similar to lupus, there is a connective tissue disease that goes through my family which causes very similar symptoms and docs were convinced I had it when it was found that I had lupus, so her doctor may be ruling out some of them first and working through a process of elimination a lot of these conditions do have very similar symptoms and there are many of them so they have to keep there minds open and not give a patient the very powerful drugs for one thing if they are not certain that is what it is. You may find a private doctor who has experience in different fields that is your right but you can also get a second opinion on the NHS you only have to ask for it and see another doctor at a different hospital.
Good luck I hope you get what you want and yur daughter gets the help she needs stay strong and positive
Hi I rang st Thomas s hospital after having a positive blood test years ago and took all my paper work and wrote my history down and booked a private app with a dr D'cruz Louise coote unit st Thomas's hospital and within that hour he understood everything I had put to him it was the best hour and money I had spent.he then transferred me over to the NHS side I travelled for almost two years to appointments with them and I wish I was still under there care.because finding some doctor who truly understands the condition is and are few and far between.i hope you find your answers but it's quite easy to makes a private app x
Thanks that is what my dr says if she gets a positive result on her blood test then they can do more, he thinks it will show positive but its when could take years. We have a private apt now thank you Lorraine
If you let me know whereabouts in the UK you are, I can tell you if there is a lupus specialist nearer to you. You could then ask your GP for a referral to them for a second opinion.
Thank you my dr has sent her to another private dr not a Lupus specialist so we will see what he has to say. Thanks Lorraine
Look in youtube for the documentary "under our skin". Best of luck x
Thank you I will do that now Lorraine
Hi. I realise this is an old post but I just wondered how your daughter is now and whether she ever got a Lupus diagnosis?
I too am finding it extremely difficult to get a positive diagnosis in spite of my escalating symptoms. This has been going on for decades and is soul-destroying.
With me, they rule out Lupus because I don't have positive ANA but I'm rarely tested. I have to beg them for blood tests to be done and am generally treated like a pest.