Royal Free visit

[Buttsy]

Hi all,

I just thought I would give a quick update.

I attended the Royal Free Hospital last Thursday ,I was seen in the Scleroderma clinic by a member of the team. She asked questions and examined me, she then went and got a senior colleague,(not Prof Denton) unfortunately can’t remember their names, i will get a letter soon with the results and an overview of the appointment so hopefully have their names on the letter. To be honest as others have said it all went well ,but I didn’t discuss all of what’s going on even though I wrote a list , I just got sidetracked and was trying to take in what they were saying. But I now feel some of these things could have been helpful in determining a diagnosis, although my husband said they would have asked about all they needed to know.

I also saw the specialist nurse who was very nice and we had a chat about the Raynauds and she gave advise.

They came to the conclusion that I am apparently in the Grey area, have symptoms but not severe no problems with heart or lungs on recent tests ,again possible limited Systemic sclerosis.

I had a Nailfold capillary test whilst there which didn’t appear to show any signs,they also took blood test and did hand x rays.

So ,l didnt get a diagnosis ,again I do have Raynauds they agreed that. I have positive ANA Centromere ,but that also doesn’t mean a definite diagnosis for Systemic Sclerosis ,they advised that can sometimes be caused by the Raynauds?. My Gastrointestinal symptoms can also be present in people without the disease so they didn’t think that warranted a positive diagnosis either.even though a Barium swallow test showed mild dysmotility, acid reflux and stasis of contrast so basically a little slow .

So it was left with let’s see what the tests results show, but probably be a wait and see scenario ,the specialist advised I could stay like this for a long time or things could change and progress.

They will write with the results and advise of any findings, they are giving me a contact number for the specialist nurse ,who I can contact should I need to for help or advise, they said I can go back and see them again , we will see on that front as it is a long way and a long day, I am still exhausted as we went there and back on the train and bus on the same day and literally spent most of the afternoon in the hospital.

My emotions are all over the place because I have come away none the wiser really, they haven’t said I do have systemic sclerosis or either have I had a definate no, just a we will see and you are in the Grey area which a few people are I suppose , but still feel in limbo and can’t really feel relieved.

I was referred via my Rhematologist at my request on the NHS so I didn’t pay, but also due to this I didn’t see Professor Denton , I would have ,had I paid for a private consultation.just something to consider for anyone who may be considering asking for a referral on the NHS , you don’t have any guarantees who you will see, as there are a few specialist in the department.

Still in limbo!

but hope sharing the experience of my day may help anyone considering a referral.

[OldTed60]

Thanks Buttsy for the update and well done with getting through what sounds like a long day. I really wouldn’t worry that you didn’t say everything you wanted to with hindsight - we never do.

I can relate to the grey area having spent 12 years in limbo land or feeling I was. It’s not good and as you know many share this area with you. I recall that sense of not belonging and not having a conclusive yes or no - or not one I trusted anyway. It’s the hardest thing. I recall being told same myself in 2020 and 21 by my loc scleroderma team due to entirely normal nailfolds and no skin tightening. The fact that two years later my capilliaries showed early scleroderma last year isn’t lost on me because I was told in 2021 that this almost certainly wouldn’t change and yet change it has.

Yes we can pay to see Prof Denton specifically but I very much doubt the outcome would have been any different for you. He doesn’t spend that much time with private patients - just 45 mins for £300 - and everything else is extra. Personally I think sometimes that experts such as him should only see those patients privately who can’t get to see him otherwise on NHS eg those from the devolved regions and those coming from abroad

Even with a very solid diagnosis of systemic sclerosis from him last year there are questions I wish I’d thought to ask now such as how did he decide that I have limited cutaneous SSc despite a diffuse antibody and what kind of prognosis might I expect to have given my rare scleroderma autoantibody. But I think the gist is that we are all in a grey, watch-and-wait areas - even with a diagnosis. So to me it seems very positive that they were all so supportive and told you that you could return and they would monitor to see where this goes. If I could get this at Royal Free on NHS I’d willingly travel from Scotland for it once or twice a year even though I know it would totally wipe the floor with me.

I have read others here say they have positive ANA Raynaud’s - sort of secondary Raynaud’s without knowing yet what it’s secondary to? I hope you will feel better as all this sinks in. The expectations we have of these appointments and of ourselves can be pretty overwhelming so please just take your time and cut yourself plenty of slack. X

[Buttsy in reply to OldTed60]

Thanks OldTed60,

Yes I am the same as you were ,no change on nail fold capillary test and no skin tightening .

Thanks for your support, I know plenty on this forum will understand the way I feel about not having a definite diagnosis.Being in the Grey area.

Thanks to all for the support

[OldTed60 in reply to Buttsy]

Yes grey area - but please try to see the positive as it means you’re less likely to get full blown organ involvement. This can only be a good thing.

On reflection about “grey areas” - I was already on maximal treatments, long diagnosed with seronegative Sjögren’s and prior to that with seronegative RA - plus treated for hypothyroidism for over 20 years. So I genuinely wasn’t looking for a diagnosis from Prof D and I made this clear to him. Rather I was looking for his unique expertise and experience with other patients carrying my U3 RNP antibody. It’s very rare. I really wanted to focus on this antibody rather than the label it comes with.

But he was very curious and clearly needed me to have diagnostic clarity for himself. So he conducted a dermascope capillaroscopy on the spot and this was very definitive. I wish I’d asked him if the rapid progression doesn’t point more to diffuse than limited now. I have very severe GI involvement - too severe to be coincidence given my antibody. Also I have many telengecstasia spots so he was able to diagnose cutaneous rather than Sine. TBH I wouldn’t have travelled all the way to see him a few years ago because I’d have felt I was wasting his time and my own money. So, with hindsight (always a fine thing,..! ) I do wish I hadn’t viewed “the grey area” years prior to pandemic as a negative - when in reality they were quite positive. I could still eat solid food. I only needed laxatives to go to the toilet and Sjögren’s could definitely have explained both this and my late onset Raynaud’s. Sometimes diagnosis (especially from afar) leaves us with as many questions as answers.

[Buttsy in reply to OldTed60]

Hi OldTed60,

Yes I am grateful !

like you said I am less likely to get organ involvement, so grey may well be a very positive area to be in.They did say if I do have systemic sclerosis then it will be the Limited form.

I like you have been on treatment for Hypothyroidism for 23years,my GI involvement is manageable with medication and my diet is not to restricted.

So I should be happy with the Grey area. It’s just getting used to the idea in my head that I may never know the cause of my symptoms.I had symptoms a few years ago and that’s why my GP carried out the ANA blood tests and that’s when the Centromere antibodies were found.I have been seeing a Rheumatologist since then.

There is always more questions and not always any clear answers.

Thank you so much for your understanding, and for helping me to see the positive side.You are a wise OldTed.xx

[Dottie11 in reply to OldTed60]

Really so very well put. Sometimes I need clarity and today you have done just that. xxx

[Buttsy in reply to Dottie11]

👍 x

[Hidden]

Similar situation here. Sometimes in medicine there isn’t an answer, not something I had considered before. I have extremely high anti centromere antibodies and Raynauds in some form and this can be indicative of autoimmune raynauds. However hard it is, if you aren’t diagnosed then that is because you don’t have enough physical signs to diagnose. It’s no good thinking ‘what if’ and waste you life worrying about something that might never happen. I came out with every symptom I could scratch but they know. The physical signs they are looking for are clear. I am assuming you saw Dr Ong? I have seen him privately and NHS and I would say don’t worry that you haven’t seen Prof Denton they work closely and Prof Denton has obviously happily chosen Dr Ong has his understudy and more than happy to leave if his patients with him in his absence.

In a couple of weeks you will feel better and you should as the best team in the UK have not diagnosed you. Tests can be operator dependent including capillaroscopy but rest assured yours has been done by the best Kevin Howell is the best. Just listen to experts. I hope that helps a little. . Xx

[Buttsy in reply to Hidden]

Hi,LLLondon,

Thanks for your reply ,

Yes it may have been Dr Ong ,I saw ,as I said I will get that confirmed when I get my letter.

My capillarscope you have assumed was done by Kevin Howell , he may work at the Royal in the Vascular department but he definitely didn’t do my test as it was done by a lady.

It was a young Asian lady who did mine.

Yes I understand you can’t always have a definite diagnosis.

It’s a wait and see game, but as OldTed said some of the changes aren’t apparent initially and changes in test result can appear later, re capillarscope.

Yes the best team in the UK haven’t diagnosed me, as you pointed out,but that isn’t reassuring to me at this time because I have these symptoms and don’t know the cause.

They haven't said that I definitely don’t have Systemic Sclerosis either.

So none the wiser.

[redmaggie in reply to Hidden]

Hi there, I totally agree with you. Prof. Denton diagnosed UCTD (Ku antibody) after a load of tests. I first attended in 2019 and apart from the disruption of covid, the care has been excellent. I am so grateful to access this clinic. I asked for a referal there after my local hospital discharged me (with erythromelalgia and other problems) to fend for myself. Yes, I too get cross with myself if I have not asked all my questions, or feel that I don't have a full explantation, but i have learnt to accept that appointments are never perfect, and health outcomes are rarely predictable!

[Buttsy in reply to redmaggie]

Thanks for your response redmaggie ,

Not sure if you were replying to my post or LLLondon (hidden).

But yes I was grateful to be seen by them ,not sure if I will be offered an appointment in the future, I haven’t recieved my consultation letter or results yet but guessing ,that will explain where I go from here , yes iam a bit concerned my local rheumatologist might discharge as I don’t have a diagnosis from them ? Just Raynauds, fibromyalgia etc,etc.

I have had time to think about it now and realised I didn’t mention all my ailments at the appointment but some may not be relevant.your right appointment are rarely perfect.

Take care .

[FelixFelicis]

hello Buttsy ,

Hope you’re feeling better now, thank you for sharing the experience. I believe you had a good experience… in my 5 years of Scleroderma, I’ve never been referred to Royal Free, never done a capilaroscopy or hand scan… all tests relevant tests I had to do in my origin country and come here with the results… it’s a long complicated journey, but seems you’re still in a good place. Keep faith, maybe situation is not that bad! 💚

[Buttsy in reply to FelixFelicis]

Thank you FelixFelicis,

Yes I lucky and my visit to the Royal was a good one , just wanted to share my experience.

[Clangerscat]

Hi Buttsy, I’m sorry you didn’t come away with a definite diagnosis, but you do have some positives from your visit. I don’t think it would matter who you saw as they are all specialists. Very frustrating when you come away and realise you didn’t tell them everything you wanted to or ask all the right questions, we all do it and it doesn’t matter how well organised you think you are. The only thing you can do if there is anything really bothering you is email the specialist nurse, they will help with anything you are worried about. Hope you will feel better about things once you have your results, Take care.

[Buttsy in reply to Clangerscat]

Hi Clangerscat,

Yes ,I was just happy to be seen in the clinic and I am sure I was dealt with by a specialist .I just wanted people to know that a referral dosnt guarantee you see Prof Denton.

Yes I was frustrated I forgot things, but yes it’s easily done.

I appreciate your reply, Thank you

[Lupiknits]

Thank you for sharing your experience Buttsy. It’s very frustrating to have to experience “wait and see “. If you are able to keep in contact with the specialist nurse that’s a really valuable resource. On the occasions I have needed to do so I have found they can have quite a bit of power in getting things moving. After I was told physio “didn’t do rheumatology “ mine immediately got me an appointment.

The first symptoms I recognise I date to the day Prince George was born so it’s been some time! After my first Rheumy appointment I was in a grey area. At that appointment they got excited about my cold hands which I just thought just normal for me. The equipment for a nailfold capillaroscopy was new and there was much excitement about using it. I was very naive about asking questions and didn’t know what was going on, so I have no idea what it showed. Since then I do!

After blood tests I was prescribed hydroxy. I was anc+ and had SL70 antibodies. I also had had severe acid reflux for 18 months previously, causing a very significant weight loss. There was no skin involvement at all.

For some time it was “wait and see”. My GP had prescribed Omeprazole, and with adjustments to diet, the reflux settled down.

This continued for quite some time; about 6 yrs. The diagnosis was UCTD. I was seen regularly. The name of the diagnosis didn’t matter to me as long as I was treated.

During lockdown my Raynaud’s became worse, I couldn’t tolerate meds because of my low blood pressure. I was started on Iloprost infusions every three months. These have had to increase to every month.

My blood test showed an extra antibody. I think OldTed and I are twins in having the rare one pop up! I now take mycophenolate.

I think at the beginning, the “wait and see” was reasonable, given they continued to schedule follow ups. Raynaud’s and reflux could be controlled. The follow ups allowed me to explain further digestive problems and still mysterious foot, ankle and lower leg solid swelling and neuropathic pain.

The year before last I was asked to take part in a “rare diseases” study. Last year the progression of my condition advanced. The “wait” had gradually become the “see”. It was officially Systemic Sclerosis. Not much skin involvement still.

This is a long post, I’m sorry. I just wanted you to know that I spent some time in a grey area which might have stayed that way.

I really don’t know if this helps but I do hope you get some answers soon x

[Buttsy in reply to Lupiknits]

Hi Lupiknits ,

Yes, you reply is helpful and knowing that others have a similar wait and see scenario and have been in the grey area, helps me understand why the Rheumatologist are careful about what they diagnose and with good reason.

I was hoping to find what is causing my symptoms , whatever it may be and obviously the correct care moving forward. No one wants a wrong diagnosis.

I think being able to contact the specialist nurse should I need to will be most helpful, whether I will get a follow up appointment from the Royal Free I am unsure ,but I am still under my local Rheumatologist .

Thank you for sharing your diagnosis story with me ,I appreciate it,most helpful.xx

[Tiggywoos in reply to Lupiknits]

That’s really helpful thank you 🙏 x

[Tiggywoos]

hey lovely

I really appreciate you posting your experience . I’ve often thought about royal free as I have weird scleroderma/myositis antibodies but never a positive Ana so I’m on the UCTD club . I totally feel for you .. it’s so hard having something wrong with you that makes you feel so blooming grotty and worn out 😢🤦‍♀️. Also no one knows what is is !!!

Well done for making the trip and please don’t be hard on yourself for thinking of what you should have said . It’s so overwhelming to be in appointments .

I think trouble is Drs think we want drugs but that’s not necessarily the case is it? All I’ve ever wanted (prob like you ) is a plan and a bit of joined up thinking . Would a simple lung function test and ecg once a year be too much to ask .

I’m glad the nurses said you can contact them that means a lot and definitely flag up anything weird and not so wonderful .I don’t know where you live in UK but I’m in Somerset and rheumatology is worse than shocking . I saw a private rheumy 20 miles away but because it was Devon he couldn’t help me as (out of area and computer systems don’t talk each other ) 🤦‍♀️. I’m sorry I’ve ranted on a bit !!!

Take good care , keep taking pics and making notes and use the nurses if you need to .

Hugs xxx

[Buttsy in reply to Tiggywoos]

Hi Tiggywoos,

You are right joined up thinking and regular check to keep an eye on things, PFT and echocardiogram, luckily my Rheumatologist did these before I went to my appointment ,I did mention them during my last visit with him and he requested them ,so I could take the result with me.

I only want medication if absolutely necessary.

I am near Manchester , so it was quite a long day, but worth it , like you said a point of contact with the nurses is a plus, should I need them.

I know weird how they can’t access our medical records in different NHS facilities , I sent test results I thought relevant to the secretary before my appointment.

You aren’t ranting at all, Thank you so much for your reply, I appreciate the replies I have had on this forum most helpful and supportive.

Take care yourself x