Royal Free Parking

Has anyone driven to the Royal Free? Is it easy to park? I have an appointment today and wondering if I should risk it.

[arisaig22]

Hi. I was driven there and dropped off so don't know about parking. I found the traffic be heavy and jammed around the hospital and was glad I didn't have the added stress of parking as I wanted to be well prepared for my first appointment I was there for several hours, which I didn't expect. I had the consultation then sent to another department for various tests to measure Raynaud's which the specialist said is important as an indicator of the systemic sclerosis overall. Sorry I can't be of more help re parking.

[Hidden in reply to arisaig22]

Hi

That is very helpful. I will get the train if it could be a long time. Very much appreciated.

[arisaig22 in reply to Hidden]

You're welcome, and good luck. I was diagnosed during the consultation, because my auto antibody/ connective tissue panel blood tests had already been done by my local rheumatologist and were sent to the RF in advance of my appointment. I hope this helps.Wishing you well.

[Hidden in reply to arisaig22]

Me too. I know what’s coming. 😩

[OldTed60 in reply to arisaig22]

I sent a letter of introduction with photos of my Raynaud’s and my own rheumatologist forwarded the last (normal) capilleroscopy of 2 years ago plus immunology bloods. The prof did a capilleroscopy on the spot and said I didn’t need the pay for more as the loops etc clearly showed changes specifically associated with scleroderma and my photos showed how bad my Raynaud’s is. This saved me time, stress and extra money so I really appreciated that he just did it himself and diagnosed me on the spot. I walked there and back from my nearby hotel as I live in Scotland. But it did look very busy and congested and I was glad not to be driving.

[Hidden in reply to OldTed60]

Believe or not, capillaroscopy is £20. Got to say, I nearly fell over. I am actually having that first. Thank you for your top tip. I am fully prepared and I have copies of all sorts. I used to work in medicine and part of this was with Scleroderma patients so I am quite well versed.

I am now happily on the train and I will check out the multi-storey for next time! On the upside Hampstead is lovely but I suppose there are easier ways to spend time there. 😂🤦🏻‍♀️

[Dottie11]

I took train and then taxi. Very busy outside I would avoid parking. I only waited about an hour for my Raynaud's test but that was a few years ago. Good luck.

[arisaig22]

Hi LLLondonI hope you got there calmly and everything went as well as could be expected.

Regards

Anne

[Hidden in reply to arisaig22]

Hi Anne,

I really appreciate your message. I am sitting here flabbergasted. I had been told I had scleroderma by our local hospital. Dr Howell said my capillaroscopy was unequivocally negative. I have now been told I have anticentromere positive Raynauds. I never even knew it existed.

[arisaig22 in reply to Hidden]

HiWell....as everyone says, autoimmune disease is a bit of a journey and often different for each of us.

As I said, my local systemic sclerosis specialist rheumatologist did not diagnose it but Prof Denton did, based on my hands and face, not bloods, I believe. Raynaud's too but normal capillaroscopy from Dr Howell...... so far. Prof Denton confirmed I have no systemic sclerosis/scleroderma autoantibodies.

My 'own' rheumatologist said a single autoimmune disease doesn't come alone. A bit like buses! So for me it's been Sjogren's and gastric antral vascular ectasia (GAVE) diagnosed 2021 so pescribed hydroxychloroquine. Raynaud's in 2022 , limited cutaneous systemic sclerosis by Prof Denton Dec 2022.. But I have actually had all of these for years, some starting decades ago, according to the Prof. No one but me and a GP who has it in her family recognised them.

So, I suppose I'm saying we are the experts in our own bodies. Keep an open mind but trust your judgement. BTW, my husband , a retired doctor now calls me The Professor 🙂.

I'm seeing Prof Denton in 2 weeks just to let him see the ongoing facial fibrosis and mouth constriction that my local hospital is uneducated in.

Hope this has not been too much for you.

Wishing you well.

Anne

[Hidden in reply to arisaig22]

Anne,

Part of the journey is people you meet along the way! I am so pleased for you that you have found a specialist to look after you and you will undoubtedly be receiving the best care, which with autoimmune disease, particularly with scleroderma, is so important.

I suppose for me time will tell. Maybe something will reveal itself in time but one thing is for sure I refuse to live by ‘what if’. None of us know what is round the corner but as long as we live out healthiest, happiest lives then that is the best we can do.

I am intrigued about Arisaig! It is one of my favourite places. I lived in Inverness for four years whilst my husband completed his surgical training but that was many years ago. I know the Highlands well!

It turns out that you are the professor and I am the enigma! If you would like to chat then please feel free to send me message from the chat icon below. Maybe our paths have crossed already! I’ll leave that with you but thank you for your lovely messages and if I don’t hear from you, good luck when you see Professor Denton. I saw Dr Ong and I thought he was brilliant.

Best wishes,

Michelle

[OldTed60 in reply to arisaig22]

it’s so interesting to me that both of you have had normal capillareroscopies and yet have been diagnosed nonetheless. In my Scottish university teaching hospital normal capillaries have blocked my diagnosis here for years and almost had me discharged with “just” Sjögren’s 4 years ago. I had to trek to see the Sjögren’s expert in Swindon privately to get a diagnosis of overlap CTD - Sjögren’s and limited SSc.

But the local team continued to block the diagnosis anyway. And any dr who referred to it in letters eg a colorectal consultant - got told to retract this?!!

So finally my exasperated dermatologist referred me for second opinion internally and I’m now under a wonderful rheumatologist in same hospital who is a Lupus specialist. I had my nailfolds rechecked twice since by the local scleroderma team because, by this time, I had severe GI dysmotility issues and a very positive but rare scleroderma antibody. Both times my nailfolds were unequivocally normal but I had visible telengecstasia and my skin felt tight to me - salt and pepper changes, increasingly severe Raynaud’s etc. also hallmark seronegative Sjögren’s small fibre neuropathy. Told I still didn’t have systemic sclerosis and all was Sjögren’s neuropathy related. This didn’t feel right to me though.

I’m used to battling for the right diagnoses and care. I too am known as both prof and enigma in my family, amongst friends and by my doctors. The enigma part is because until now no one has ever identified the fact that I have EDS (presently assumed to be hypermobile but we will see..!) even though every physio mentions it and it’s always been clear as day textbook to me.

So finally I trekked to see Prof Denton 3 weeks ago and scleroderma is in my nailfolds now and with the highly positive antibody and skin tightening he could see where local rheumatologists couldn’t - and severe GI involvement end to end - he easily confirmed limited cutaneous systemic sclerosis and agreed that Sjögren’s is also present from reading a copy I showed him of my lip biopsy report of 2016. Also without any prompt he exclaimed that I’m very hypermobile - especially in my skin. So that’s two polar opposite collagen vascular conditions I was told locally that I didn’t have 2 years ago, now confirmed unequivocally by prof Denton.

That the three of us plus many others have to wait, trek and pay to travel and see one eminent dr at Royal Free for a simple test and for their overall expertise (he said he would have likely diagnosed Sine otherwise) is so daft and wrong? X

[Hidden in reply to OldTed60]

I actually paid for my consultation too. It is the best money I have ever spent!

[OldTed60 in reply to Hidden]

I agree and no regrets at all. Apart from anything else I got two diagnoses confirmed in one consultation and Prof Denton is the only rheumatologist who has other patients with my antibody so was able to explain his findings associated with my tiny cohort.

However I had already been diagnosed with scleroderma by one of his English colleagues, whom I saw privately 4 years ago - so he asked if he could copy her in on his letter. She and my local dermatology prof have both been certain I have LCSSc since they first saw me in 2018/19 and I’ve been under various Scottish rheumatologists since 2011. So I do feel a little exasperated about doing all the forking out for travel and diagnoses which have been blocked by the local team. I don’t earn or have much to live on much and travelling so far from home also takes its toll - presently on my spine which is very herniated, making it hard to walk or sit! x

[Hidden in reply to OldTed60]

That really does seem very unfair. Travel isn’t cheap. There used to be funds you could claim travel allowances from but it was a long time ago I worked there. Might be worth exploring.

[Hidden in reply to OldTed60]

I have just re read your message! You really have been through it. I have been told I don’t have systemic sclerosis. I have severe Raynauds, only in my feet. But my autoantibodies are positive. Same as Dr Ong said we don’t know how many people in the general population has positive antibodies.

Autoimmune disease is very complex and convoluted. Obviously no two cases are the same. It’s very strange isn’t it?

[OldTed60 in reply to Hidden]

So interesting - and how do you feel about being cleared of having scleroderma? Relieved I’m guessing? Will you still be treated locally or carry on attending the Royal Free for monitoring and treatments? I hope this was a validating and reassuring experience for you too?

I think there’s “positive” and “positive” with autoantibodies - but agree that they shouldn’t be diagnostic of themselves unless there are other compelling symptoms.

Originally I had a weak positive antibody specific to LCSSc but since then it’s been replaced by a consistently high positive (retested twice a year due to the local immunology team being so keen to know if I have diffuse Scleroderma) and titre. It’s usually stand alone on my panel but every now and then the old LCSSc one comes up as equivocal. I asked Prof Denton what this meant and he shrugged off the weak positive one as said they see this often with autoantibodies coming and going. It’s of the same nucleolar pattern on different less reliable assay panel.

The definitely high positive and fairly diagnostic one is called U3 RNP. It has been associated with overlaps - particularly Myositis. But is also more often found in a younger black male cohort - where I’m Caucasian, female and older (60). He said it’s associated with the most severe GI involvement - which tarries and also with PAH - which so far I haven’t had but he said I should be getting tested annually - which I’m not. I have a suspicion that the hypermobile spectrum disorder is probably genetic and associated with MCAS for me as he implied - but didn’t state. It would take a geneticist to run the relevant tests and not likely to get this locally so will have to decide whether it’s important enough to pay for next for the sake of future generations and also in case I need further surgical interventions or big gun treatments x

[Hidden in reply to OldTed60]

I am certainly strongly positive but that’s their diagnosis.

I am going to be looked after by the Raynauds nurses. I will not be retested. I am not having further capillaroscopy as far as I know. X

[OldTed60 in reply to Hidden]

well as long as you feel this is right for you then I am pleased for you.

However, as I’m sure you know, systemic sclerosis can evolve very slowly, and with antibody and severe Raynaud’s in feet so it’s good that you are being monitored by Raynaud’s nurses and you know what to look for and where to go if things progress.

Your account makes me feel somewhat more sympathetic towards my local Scottish team than previously - for blocking my diagnosis until it showed in capillaries - although they always acknowledged I had Sjögren’s and other hypothyroidism at least and also acknowledged that I carried this scleroderma antibody X

[Hidden in reply to OldTed60]

According to the consultant a negative capillaroscopy is indicative of the next 20-40 years. Being in my 50s that will do me nicely. It also depends on the kit they use for capillaroscopy. A dermoscope will not match video capillaroscopy so maybe your local team missed it. Let’s face facts they certainly don’t know a huge amount about it. It is a superspecialised field. My GP thought I was talking about lupus. In fact I don’t even think he knew what it was!

I refuse to live by ‘what if’, it will ruin your life and I am reassured that I could not have been seen by a better team so I can’t do better than that x

[OldTed60 in reply to Hidden]

I think it’s a great attitude to have and one shared by a fellow Scottish patient who saw Prof Denton last year and was told same as you - although she was diagnosed with UCTD but doesn’t have Raynaud’s in her hands so far.

If Royal Free experts can’t get it right then no one can!

Oddly my first 3 “entirely normal” capilleroscopies were done by highest magnification as video capilleroscopies in my hospital all within the last 7 years.

Whereas Prof Denton just used a dermoscope for this one - through which he clearly saw early scleroderma capillary loops and vascularity. As I was leaving I asked him if he still wanted me to pay £20 to have the more sophisticated one or get another done once back here perhaps? He looked puzzled and said “what for? That won’t be necessary as I’ve already clearly seen the changes and will report these in my letter!”. Should have been obvious to me that things have changed as my Raynaud’s has worsened a lot in my hands recently. I think mine is progressing quite fast despite Mycophenolate and Iloprost. However I just got muddled as i was leaving his room because my own rheumatologist had told me not to bother with microvascular testing at Royal Free as nothing was likely to have changed in the space of 2 years. It’s all been bit of a shock tbh as had gone into denial.

I say all this not to worry you of course as have heard and been told exact same thing as you were told. Also I was told that if it’s worse in feet this is unlikely to be scleroderma - so that makes sense of your diagnosis too. I knew mine was secondary having watched a SRUK webinar about Raynaud’s recently where the rheumatologist explained “the rule of thumb” is that if thumbs are involved it’s most likely to be secondary. I already had a solid diagnosis of Sjögren’s and hypothyroidism and my thumbs are now very much involved unfortunately X

[arisaig22 in reply to OldTed60]

Hi Folks I too am a patient at a Scottish teaching hospital with a rheumatologist specialist in systemic sclerosis/scleroderma , but only since late 2021. Prof Denton told me she is excellent and also a SSc specialist, but she only diagnosed Sjogren's (high titre autoantibody) and has been very nice but made too many errors and even contradicted herself. I do feel for everyone who worked during the pandemic and so I show her warmth, respect and don't criticise her. Had it not been for a locum GP whose uncle ( a doctor) has it I think I would still be undiagnosed. Too many clinicians rely on blood results rather than clinical examination. Prof Denton shows how it should be done. Quote from an irritated GP after the Sjogren's diagnosis: "You've been here for 15 minutes and already mentioned so many body parts, I don't know where to start." I told her I was very sorry, I must have come to Tesco by mistake. That was quite naughty but I have a very dry sense of humour, which can be a bit like Tourette's! We really must keep laughing, but perhaps not maniacally.🤪

I saw Prof Denton privately, followed similarly by my husband's excellent NHS neurologist in London, who diagnosed and explained I have neuropathy associated with vascular disease;vascular instability as he termed it. He was politely astonished when he read my medical history. I now know why I am clumsy and everything feels very heavy. Worth every penny, although the neurologist refused his fee.- a real gentleman.

Your health is your wealth, - my friend's favourite saying. Knowledge is power: an old social work(er) saying.

So, it turns out that years ago I went through the systemic sclerosis skin tightening, telangiectasia, tissue loss phase, comprehensive tendonitis etc without medical curiosity or intervention. I had to retired 15 years early as a result. In the end, it was severe anaemia that got the GP practice very worked up - thought they'd missed cancer ! I was just relieved that I wouldn't have to start training for sponsored marathons or climb Mount Kilamanjaro, as folk seem to do. Sorry, my dry humour again.

By the way, I've discovered family members who have autoimmune disease and not really shared tye news. My aunt in Salford finally told her GP she has nieces with named disease and within 2 months had every test that Prof Denton said I should have and am still waiting for in Scotland. Her consultant was previously in Prof Denton's team at the RF.

Well I've 'talked' enough - it takes me ages to type as my fingertips don't do ql on a phone jeyboRd. See what I mean? Constant corrections.😄

I hope everyone has a decent enough day today. The sun is shining in Fife, so far . Washing will be out- a wee thing to be grateful for.

Wishing everyone well.

Anne

[Hidden in reply to arisaig22]

Morning Anne,

The consultants too. You need to rely on clinical findings as we don’t know what the bloods show of the general population. This has not been studied.

That may help someone undiagnosed and worrying. X

[arisaig22 in reply to Hidden]

Morning Michelle,Yes, the consultants too.

Prof Denton has spent his working life researching this...40 years possibly? What dedication. A proper doctor.

Hope you're having a good day, after yesterday's news.

Onwards and upwards.....possibly with a limp😉

[Hidden in reply to arisaig22]

Ha ha! You are funny. 🤣. October I will be limping for sure. 🤣🤣.

I hope the husband is keeping well!

I have to say I don’t think a question about parking has ever turned into such fun! I do feel I have to disappear now though after my diagnosis

I wish you all the very best with your health and treatment. If you are on the Raynauds pages we may chat again! X X

[OldTed60 in reply to Hidden]

Ps please don’t “disappear” from here as this is as much a group for Raynaud’s sufferers as for scleroderma people! X

[Hidden in reply to OldTed60]

Thank you. I will stay! X

[Halfwayuphill]

Hi Michelle,

Just thought I’d chip in here as followed your posts. I have been going to the Royal Free for an astonishing 23 years! I know exactly how you are feeling. It’s strange hyping yourself up for the worst then finding it’s mild when you know how the illness is making you feel. I was diagnosed with RNP positive UCTD after the first appointment with Dame Professor Black before the capillary test and second lung function and they were concerned it was scleroderma. I had no idea what scleroderma was and was very frightened between those two appointments. It’s been a bit of an up and down journey. I was then diagnosed with RNP positive UCTD which needs follow up. Some years ago I lost the RNP antibody but have course specked and was told antibody positive Raynaud’s In recent years based on symptoms it’s UCTD possibly moving towards limited Systemic Sclerosis. I’ve been checked every year and various drugs (not immune suppressants) have been added along the way to help symptoms. Right from the beginning my worse symptoms were my digestive tract and fatigue. I’ve had great care from the clinic at the Royal Free but I think psychologically all these titles (and differing stories and opinions on them) doesn’t help but perhaps that’s the nature of autoimmune conditions.

I think your attitude is right and indeed non of us know what’s around the corner. I worry now with my husband aging he is not checked at all whereas we are in the system! Incidentally I laughed about your enigma story. One year my headmaster wrote on my school report I was an enigma without variations! Needs to go on my epitaph 🤣.

Sx

[Hidden in reply to Halfwayuphill]

I have been told I simply don’t have systemic sclerosis. I have antibody positive Raynauds. Apparently it happens.

It is very nice to meet another enigma! 😂

[laucar1]

Very difficult to park at the Royal Free. If your appointment is a short one then you can park in surrounding streets and pay on an app but not that many spaces. If your appointment is a longer one then the best place is to park in the car park on Hampstead Heath. Again it is a pay by app and not too badly priced (around £5 for up to 3 hours I think). It can be extended via the app too. However, it is a 12-15 minute walk from there so if your mobility is poor it isn't ideal.

[Halfwayuphill]

On the parking front, we have used the Just Park ap. in the past we’ve parked in residents drives just up the road. You can only book for a day and prices vary. I think we’ve paid between £10 and £20. Not cheap but train tickets add up. Last two occasions only a five minute walk away but small drive so glad we took our fiat500!

[ArthurFoot]

Yes but I would get there early just in case ... there is a small carpark to the right built into the hill and another around the back ... it's usually very busy and you may have to wait for someone to come out ... otherwise there is metered parking ... it's a gamble

[Hidden in reply to ArthurFoot]

After going yesterday I might give it a go next time. There were only two cars queuing!

[hunkyd0ry]

I think the hospital itself has very limited parking spaces and I think they are time limited too. Not entirely sure. But to save myself the hassle I tend to park in East Heath car park. If you use the RingGo App to pay then you have the advantage that you can extend your stay via the app. Very handy if your waiting time is longer than expected.

[Hidden in reply to hunkyd0ry]

thank you for this.

[KathleenMary]

Hi I feel overwhelmed by the answers to your question. How on earth do all your respondents know so much about their condition and how it has been diagnosed.I know that over the years of my illness I have been diagnosed with RA then Raynaud's was added,followed by Mixed Connective Tissue disease and more recently limited cutaneous scleroderma.

But the only tests I've had are blood tests and ecgs,lung function ,bone density check ups. (NB I also have osteoarthritis)

How can I be sure my diagnosis is correct?

[Hidden in reply to KathleenMary]

I can only but recommend the team at the Royal Free in London. They are a specialist centre and if you are in doubt then a second option would not do any harm. If you have been diagnosed you can ask for an NHS referral or alternatively they have a dedicated website for private patients. I hope that helps a little.

[KathleenMary in reply to Hidden]

Thanks