I am desperate and wondering if anyone has ever gone private in the UK and if so if anyone could recommend any good rheumatologists? I feel I have run out of options and private is the only way forward. I just feel so depleted and upset.
To give some context, I am just tired. I have been unwell for over 20 years since I was in my teens. I have in that time had some negative experiences with the NHS (no disrespect meant, just sharing my experience). I have been formally diagnosed with UCTD (undifferentiated connective tissue disease), Raynaud's, Bowel issues, fibromyalgia (and multiple other things). I have been verbally told that I have a positive ANA with Hep-2 and also they have said positive ANA- fine speckled nucleolar. I have been told they cannot deduce what disease I have as the ANA test does not make a shape that matches anything so rheumatology suggests that I will develop lupus OR I have a brand new disease. They have suggested immunosuppressants but they have now decided not to do this as I keep getting multiple infections. So basically I just get left. I get seen once a year or once every 2 years where they do bloods and that is that. Meanwhile I get worse and worse.
I was told that they suspect secondary Sjogens disease and that I have signs of arthritis but no official diagnosis as of yet.
All I know is that I am going downhill rapidly in the last 5 years and I feel like nobody listens to me. Im not even 40 and already I feel this disease has striped most of me. I have had the same rheumatologist for over ten years. I often do not see the same person twice and have to explain everything from the start so often dont get time to discuss the new issues or have continuity. I often feel like I am just being 'managed' and left. I never feel like I am heard and validated. About 5 years ago I stopped being able to walk far at all- this came on out of nowhere. I erupt in daily rashes and get severe burning and itching when I try to walk alongside rashes. I am bruising frequently when I do not hit my skin. If I try to walk I can get severe pain alongside the rashes etc. I started to have urinary and faecal incontinence. When I discussed this with the rheumatologist at that time they were insistent this is mainly fibromyalgia. I disagreed with this. I had been put on fibromyalgia workshops with them and I understand the symptoms but the things I was going through were not included in Fibro. I was so angry that I told them that I didnt feel they were taken the autoimmune side seriously and that a lot of what was going on felt more related to autoimmune and importantly for me was getting worse. I still was not heard so I wrote a letter outlining all symptoms with photos to back everything up. I get multiple rashes everywhere daily, rashes on my cheeks that now never go, severe fatigue, recurrent infections, hair loss, mouth ulcers, issues with light, joint pain, I also now have telangiectasia on my face and legs and arms. There are a load more symptoms but this outlines the gist of some of it. I got to see dermatology via rheumatologists for the multiple types of skin rashes and issues. Dermatology diagnosed about 6 separate skin conditions and when I asked if this is linked to autoimmune I was told immediately not at all- nothing to do with it. I think my jaw dropped as I knew this was not the case from my readings with autoimmune and skin reactions.
To cut a long story short, I got to see a different dr thanks to a GP for allergy issues. It just so happened this person was also a specialist in autoimmune (but not a rhematologist). They were lovely and I went over all the symptoms and could not believe the difference- they really listened to me. I went over all the photos at their request- they said they felt it was clear that I have mixed connective tissue disease. They wrote to my rheumatologist and expressed their views. For a short time, I did feel that the rheumatologists were more understanding but when I spoke to them this year they went back to saying most my symptoms are fibromyalgia- I feel like this is all I will ever get from this team and I just can't take it anymore.
I feel I just want to try seeing someone privately who may actually listen to me. I cannot afford it but I can save up and it would be 100% worth the money.
I understand it must be hard for medical teams to diagnose rare conditions and I am okay with not knowing for sure what this is. But I do want to be listened to.
Thank you for any reply.
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Catsareawesome1
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Hello Catsareawesome1 and welcome to the forum. I’m sure you will find it supportive.
I’m so sorry you are going through all this stress with your illness and care. Yes I’m sure I and others can suggest someone you could see for more clarity. You will find many of us do this and can sometimes get onto the right persons NHS list as a result. I suggest Professor Denton at the Royal Free. He runs the Scleroderma unit there but has many patients like me with UCTD.
You mentioned you have a course specked ana with what I presume is a hepatitis one. Do you know if you were ever RNP positive? That is prevalent in many autoimmune conditions but at high level indicates MCTD. They should have given you printouts of these blood tests. The consensus amongst many rheumatologist including the Royal Free is MCTD is better described as overlap if you have the criteria for a definite diagnosis of more than one disease or UCTD if you have signs of more than one disease because it could change to one or another. I think the fact RNP is evident in Lupus and Scleroderma etc does confuse things. The other thing is your antibodies can come and go. Mine has dropped off but I’m much worse with gut problems, bladder etc. I also have a friend who has had MCTD for 40 years. She was seen by Dr Hughes years ago. She has got deformed hands and joints because she had the RA type. Her antibodies have dropped away but she’s much worse with heart and lung problems. Her symptoms are more Scleroderma now.
A good rheumatology clinic should check you annually and be open to a definite diagnoses if you have more symptoms without new antibodies appearing. If of course (as can happen) symptoms go perhaps it’s ok to be discharged. From what I’ve heard from others though over stretched rheumatology clinics are possibly using the uncertainty in diagnosis to cut their lists and also from a survey SRUK did many rheumatologist’s struggle to understand these illnesses and have very little training in them in medical school.
All this doesn’t help and the fact UCTD is considered an unclear diagnosis. Changing from MCTD may be felt to be the correct thing to do but we are left open to confusion and not getting the right help. UCTD is definitely a disease though so as long as we are seen and taken seriously hopefully that is enough.
One last thing, you mentioned you would have to save up for private. Your GP should actually be able to refer you although I’m not sure if you would wait longer.
Also, I see Undifferentiated Connective Tissue Disorder (UCTD) as Undefined Connective Tiisue Disorder.
It could be argued that it is a limitation in current understanding of disease processes and mechanisms, and then inadequate testing that fails to 'Define' us,
The relationship with disease severity is not straightforward. I read of many here on this forum with a UCTD diagnosis, and symptoms are far from mild.
At the same time, I'm some places, people with positive bloods, yet few or no symptoms, are getting diagnosed with SLE and are being seen regularly to see if it is becoming more active. I know someone personally who is being seen who has no symptoms, by the same department that told me symptoms were in my head after saying I had not got autoimmune disease like Lupus or Sjogrens as I walked in the room. A statement that must have been based on bloods as no symptoms discussed then.
Research needs might be impacting and influencing who is seen and not seen.
Patient need is not being prioritised always. In fact, easier cases they may prefer to see.
If not been tested ask your Gp to do bloods for Celiac. Reasons , it does not always show as gut symptoms, it is auto immune. Go to Celiac uk and read all the symptoms it causes you will be amazed. I write this because I was misdiagnosed as Fibromyalgia. I went on to have many other conditions because the Celiac was missed initially. Just rule it out and get them to check your thyroid too. Then when you seek another Rheumy you and they will have more to go on. Good luck.
I am so sorry you are having so many problems with diagnosis and treatment.
My daughter is in a similar situation as her local hospital refuses to treat for symptoms because of lack of evidence from blood work.
In desperation we have seen a rheumatologist online privately-it cost £270. We did our homework first to check he was attached to the hospital we could drive to which is a lupus centre of excellence and asked to be referred on the nhs.
We had to wait 6 weeks for the appointment and finally attended last week but unfortunately didn’t see him so ended up explaining everything again from scratch!
Time will tell if this is an improvement on her local hospital or like you she receives a seventh auto immune diagnosis which has no treatment attached!
You are entitled to a second opinion on the NHS so you could ask your Gp to refer you elsewhere although it might take time.
Good luck and keep fighting-many patients are in your situation and perhaps talking to other people would help? Ask Lupus Uk for details of your local lupus support group and you will find where other people have gone for answers!
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False negative ana?
Possible Lupus?
Notes for upcoming GP appointment 
Diagnosing blood tests
