Has anyone else been fobbed off by an NHS rheumatologist to then go private and get a full diagnosis?
I tick every box for lupus with symptoms and bloods but am having difficulty accepting my diagnosis as I was previously fobbed off by an NHS rheumatologist.
Feeling validated each time somebody listens and believes you helps.The Wren Project provides good listening ear.
Joining local group if others have the same experience and diagnosis. Knowing you are not alone.
A GP that has witnessed what you have been through both with symptoms and your diagnostic journey.
I have found this forum helps a lot.
Hi nice to meet you
Yes mine took my lupus diagnosis away
Sorry hear I'm glad u got seen in AE and treated well.
I can't advise re private because did in beginning and then was same consultant saw on NHS.
yes I think that’s my worry going back to the same department on the NHS and them saying that it isn’t lupus and stopping my medication etc but I don’t have an endless pit of money to stay private.
Oh no
That's ridiculous why they doing this now or is it new policy.
But my team here at hospital treat me as lupus because they originally diagnosed it.
If was there with lupus they feel differently I think it's all down to money
I was diagnosed 8 years ago AFTER going private. I then was referred to NHS which was a nightmare. I have been private again for 18 months now and am grateful I can afford it BUT there is still a limited amount of knowledge or patience amongst medics. I am trying for an NHS referral to St Thomas’s Hospital in London just so I can actually talk to a Dr with real experience on Lupus not just rheumatics.
The best thing is to understand the reasoning of both consultants. It could be the NHS rheumatologist told your GP they suspected autoimmune disease but wanted you watched to see how you did.
It is uncommon to get a clear cut diagnosis of lupus without meeting criteria. There are ways of describing those patients. Maybe the private rheumatologist noted things on exam like ulcers in your mouth or swelling in joints that you didn’t have before.
If you know your labs and symptoms from each visit we may get clues.
Right now you know nothing other than a new diagnosis. The only way to understand the difference in diagnoses is to know the consultants’ reasoning. Your GP can also help with that.
Best of luck.
Kay
I’m not sure if you were responding to me or someone else. Unfortunately I was completely fobbed off in my NHS appointment despite the initial conversation between my GP and rheumatology resulting in a rheumatologist advising that I needed to be seen by them due to my symptoms and blood results. The woman I saw was patronising and inferred that women of a “certain age” get exhausted and not to overdo it, she told me that maybe it was down to menopause but whatever it was it wasn’t autoimmune (although she sat on the fence a little bit more than the appointment with her letter I expect to cover herself). Having now been on patient webinars and been seen privately with a rheumatologist who specialises in connective tissue disorders I have had no more tests and given the same background and have abnormal CRP, IGM, Rheumatoid factor, positive ANA and anti dsDNA along with ulcers, joint pain, extreme fatigue, photo sensitivity, periods of fever with worsening fatigue just to name a few symptoms which is why the private rheumatologist said she couldn’t understand why I was previously fobbed off. My GP has been great and in full support, in fact she was the one who told me I must raise a complaint with PALs.
Sushilovey -
It certainly sounds like the private rheumatologist had reason to suspect lupus without meeting criteria your labs and symptoms. The devil is in the details. Ulcers have to be seen on exam. Only a doctor can know if they are lupus ulcers or canker sores a healthy person can get.
You had joint pain but they do look for certain signs on exam. The private rheumatologist may have noted tenderness or pain.
How did the rheumatologist explain your positive ANA and anti DNA?
It is puzzling. If you didn’t have rash, abnormal urinalysis or inflammation in major organs the NHS rheumatologist may have wanted to watch you longer.
If your GP advocated putting in a complaint, I would definitely do that.
If you could post the rheumatologist’s letter, that would be helpful. One shift can make a difference. You need to know what she saw. The ANA is an entry point. They look at ANA titer also. From what you have said, you have anti DNA antibodies and fever which give you eight points of the needed ten to diagnose lupus. Yes, these are research criteria but are certainly used in practice.
I have a diagnosis of undifferentiated connective tissue disease. My doctor leans away from lupus because of normal complement, low and episodic ANA and negative DNA antibodies. You need to hear both rheumatologists reasoning.
It is very complicated. Surprised GP wasn’t asked to follow you by first rheumatologist.
As I said, it would be helpful to see the letter.
We can help by using ourselves as examples in this difficult process and trying to guess about what happened. You might want to see a new NHS rheumatologist. That could clear things up.
Kay
yes it was very odd and I also have had several pericardial effusions over the last 2 years which have been completely unexplained until now. I don’t feel comfortable posting a medical letter on the forum but was just asking if anyone else had been in a similar situation especially as my GP was so annoyed at the response from the NHS rheumatologist and it seems like this is a regular occurrence from people’s experiences on social media. I should add that I have an 80 titre, malar rash and raynauds.
I think it is a regular occurence.I would worry about going back to the same place to see a colleague, as I expect their rules on who to see and who not to see are agreed at team level. Like in other jobs I expect most staff will be following the advice of a manager / lead consultant.
After my appalling NHS experience my GP said he would refer me anywhere in the UK to get help, they were aware I obviously I needed it.
To be quite honest I thought other local NHS hospitals might well be the same so I got advice from others here who had had similar experiences and worked out what to do.
It was very traumatic, I had so much going wrong and then on top of that being told I had not got autoimmune condition like lupus or sjogrens as I walked in the room. Before anything was even discussed and before there was any examination. It was bizarre. Just could not believe how aweful they were, and there was nothing I could do. I was angry because I had faith in the NHS, and here was someone that did not make sense.
Logically my UCTD diagnosis could have been made by local NHS as it is a condition you would think they would diagnose and treat. Sometimes I think it is age too, from this forum it seems that way anyway.
I just came to the conclusion they were not interested in helping me, and said anything to discharge me.
Just because someone has qualified as a doctor and then a consultant does not mean they are nice, or honest or smart ..think I am discovering many that are not. Then the good ones really shine out and you wish they all had the same experience intelligence and bed side manner.
Sushilovey -
It is odd. You do have a lot of signs and symptoms. I bet if your GP refers you to a different rheumatologist on the NHS, you will get a diagnosis.
Does your GP think she can write a prescription from a private rheumatologist? One member just tried and didn’t succeed. She is now with a great rheumatologist at Bath. Because she is one the NHS she is able to get expensive and rare tests as well as new medication. Maybe she will respond to your post.
Hope you are able to get on medication soon.
Kay
Hi Kay, yes I am already on hydroxychloroquine. The private consultant has written a letter for my GP which we have forwarded to PALs and they have advised that they will arrange for another appointment and apologised for the 1st appointment but it’s made me a bit anxious as I will be seeing one of the original NHS rheumatologist’s colleagues so it’s hard to believe that I won’t have the same experience. I do agree with the lupus diagnosis, it makes a lot of sense and am hoping that the medication will make a difference and that I won’t keep getting the effusions and that the fatigue and joint pain will lessen. Originally I thought it may be Sjogrens and this is all the original rheumatologist really looked at so I didn’t really make any lupus connections until my private appointment and diagnosis. Private rheumatologist believes that there are Sjogrens symptoms but advised that this could be secondary or could just be Sjogrens symptoms without having it as there is overlap with some of the connective tissue diseases but has ordered some further tests to rule it out.
Well, the colleague may agree with private rheumatologist. They can do more tests to see about Sjogren’s too. Yes, there is frequent overlap.
Glad you are seeing a new NHS rheumatologist.
We can help you with questions to ask.
Kay
Trying to get a diagnosis
Confused & frustrated about getting a diagnosis
No diagnosis yet
Hopeful for diagnosis tomorrow!🤞
