Hello, I am a 56 year old female and I'm a bit unsure where to begin with my story.
Maybe background first. In her 50s, my mother developed Raynaud's. She then went on to develop Scleroderma. It was misdiagnosed for years. This was in the 90s. She eventually saw Professor Carol Black who confirmed it was Scleroderma and that it was very advanced. My mother died from complications brought about by Scleroderma when she was 69.
Over the last few years I have developed Raynaud's, with it becoming more acute in the last 6 months. I saw my doctor in May and shared my family history with him. Consequently I was given blood tests with the result for my ANA being highly positive.
My doctor hasn't got a clue about Scleroderma and has asked for advice from Rheumatology at my local hospital. I am waiting for a referral but have been told it could be months.
I live in Cornwall and wondered if anyone knows of a Scleroderma specialist in the Southwest so I can reduce the wait, and also see someone who knows something about Scleroderma.
Thank you.
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I’m sorry not to be able to advise on private specialists in south west because I’m in Scotland. But from my own personal experience you might be best to try and see professor Chris Denton at London’s Royal Free if you’re going to go private. Warning: there was still a long wait of 5 months when I booked to he him last year for a one-off private consult. But on the very plus side he is considered the UK’s lead scleroderma specialist so definitely well worth the wait and the fee - both in gold bars for me. If you do decide to go down this route then I would advise you to phone his PA (info online) and book an appointment with him asap.
Meanwhile, as you wait for your NHS appt and the private one, you could gather as much info as possible via your GP ie more specific antibodies, full blood count done before, imaging ie chest xray or MRI, blood pressure readings and treatments you have tried for Raynauds including self care, any history of GI complications or reflux etc. I do hope your +ANA (try to ascertain details eg pattern and titre) and history don’t signify systemic sclerosis. But if they do then there are many more treatments now than there may have been when your mother was diagnosed. Also, just because your mum has scleroderma it doesn’t mean that you will - there are other autoimmune diseases such as Lupus and Sjogren’s and plenty more, which are equally associated with Raynauds and +ANA. So please try not to worry and definitely keep an open mind. Best of luck - let us know how you get on 🤞🏻😊x
I carry a nucleolar ANA too and a rare scleroderma antibody which only showed up 4 years ago. I was already diagnosed with RA and then Sjogren’s, now systemic sclerosis. I do really understand about avoiding dr google. However SRUK info online is also very much to be trusted - same with the Scleroderma education project and the foundation (American). It’s as well to approach this with some basic knowledge which I’m sure you already have acquired. For me personally research has been key to finally getting correctly diagnosed but I’m lucky to have a fabulous local rheumatologist who treated me regardless of the precise diagnosis and who has been happy for me to see Prof Denton and then contact him since, about me.
You’ve had some excellent advice here re the Bath centre of excellence. Take care x
Hi there, I am pretty sure that your specialist centre will be in Bath. Here is the link to their website. I have no idea if any of the Consultants see people privately but I would think they must. As a specialist centre they take referrals for all over the country so I am not sure you will have a shorter wait but they might be able to give you some idea.
I would go back to your GP and ask for a referral to one of the scleroderma specialist centres. You can look these up on the SRUK website.
I live in Dorset but am seen at the Royal National Hospital for Rheumatic Diseases in Bath. (Now part of the RUH). Victoria Flower heads up the scleroderma team and is great. You may have to travel quite a distance but it is well worth it. My experience is that rheumatologists at regional hospitals have no clue how to treat scleroderma or how to monitor you for potential complications.
I believe waiting times are long everywhere but try not to panic. In the meantime you could try asking your GP to try you on nifedipine or felodipine for your raynauds. These are both standard first line treatments. Or they may agree to try you on sildenafil (which is viagra) and is very effective at treating raynauds. I would do some online research & print it off to show your GP.
Hi I am currently seeing Dr Pauling at Southmead hospital in Bristol. He has moved here from Bath which is also a centre of excellence. He is a specialist in scleroderma and I think a referral to either Hospital would be good. Keep in mind for continued treatment you would have to make fairly regular trips at first
I hope you don't mind me asking you this but I noticed that you also see Dr John Pauling at Southmead Hospital. I was diagnosed with Systemic Sclerosis 18 years ago and have thought at times I would have liked to have had the opportunity to attend a local support group. So few people know or understand this condition which can be frustrating. I live in North Somerset but there aren't , to my knowledge, any groups close by. I once mentioned to Dr Pauling my thoughts about setting up a group which perhaps met up twice a year and he indicated he could possibly help with venue / tea biscuits. I haven't pursued this partly because I don't know anyone with Scleroderma and also my lack of IT skills eg setting a Zoom meeting. Have you any thoughts? I'm female and just turned 76 years.
I know what you mean it would be quite nice to be able to talk to people in person. I don’t feel up to setting anything like this up at the moment though and I am considering moving away from the area to be nearer my sons. Quite happy to respond anytime online though, have to confess my IT skills aren’t up to much.
If I can help with setting up an online group, please let me know. I spend a great deal of time on Teams and Zoom meetings because of my work so am a reluctant expert (sort of!) x
Many thanks for your offer of help in setting up an online group. If I'm able to organise a group in the future it would be very helpful to take you up on your kind offer. Best wishes
I agree. I lived in Birmingham when my scleroderma was diagnosed and was referred to Professor Denton at the Royal Free I now live in Lincoln but still looked after at Royal Free as well as local rheumatologist and respiratory consultants. I am now also under the care of the pulmonary hypertension team at the Royal Free Hospital. They have all the essential specialists.
I also live in Cornwall (SE) Tamar Valley. I was diagnosed 14 years ago with Scleroderma at the age of 57. I’ve had severe Raynauds since I was 22 but no health professional ever suggested it could be secondary and I certainly wasn’t aware of the implications. My health deteriorated terribly in 2009 but my GP couldn’t find out what was wrong despite testing for everything under the sun.
My mother had died from complications of Lupus when she was only 73 and it occurred to me that maybe that was what I had. I requested blood tests and my results showed Scleroderma.
I attend rheumatology at Derriford hospital. I am looked after reasonably well but I wouldn’t say there is an expert consultant in the team. None of the GPs I have seen over the years have knowledge of Scleroderma, even the newly qualified ones.
In the first few years of my diagnosis I found this very difficult and upsetting but as time goes on I have learnt to educate and look after myself as best I can.
I am also in SE Cornwall and Derriford is my local hospital too. What you say about Rheumatology isn't that reassuring, but I'm really not surprised ☹️
I live in Wiltshire and I am under the care of Dr Victoria Flowers at the Bath institute for Rheumatic Diseases which is part of the RUH in Bath. Her specialty is scleroderma and I have been very well looked after by her team and had every test to make sure I am generally well. Push your GP for a referral. These specialists work together and she said they talk with Professor Denton at The Royal Free should they need to trouble shoot. I might add that once she received the referral I only had to wait 3 weeks for my 1st appointment as she likes to act quickly with scleroderma patients. I then had a barrage of tests but I live nearby so it was easy to keep going back.
Hey there I am under the joint care of musgrove and royal free it’s been a scary journey so far as mine started with Raynaulds then bladder Gi and swallow now it’s started on my liver just push for a referral to the nearest scleroderma specialist and go from there it can be out of area I will say you do need to be able to speak up for yourself as even now I have conflicting opinions but I stand my ground mine is systemic sclerosis scleroderma without skin involvement but lately I fear my skin is starting to be affected. We are all hear for you and try not to go down the rabbit hole of despair, document all of your symptoms and take with you to specialist . There are lots of treatments to help with symptoms but the more you can tell them the more effectively they can treat you big love from me xxxxxx
I was diagnosed with Systemic Sclerosis 18 years ago and now see Dr John Pauling at Southmead Hospital's Scleroderma clinic. I have always found him very helpful and the fact that he previously worked at the Royal National Hospital for Rheumatic Diseases means he has strong links with the RUH. I'm also currently being monitored by the Pulmonary Hypertension team at the RUH. From what the others are saying it seems that these specialist centres are the nearest for you which must feel difficult for you living in Cornwall. I can say however that I've felt very well cared for over recent years by both these hospital teams with the up's and downs of this condition. Good luck in getting the help need.
Thank you so much to everyone for replying to me. You are all incredibly kind and I'm so glad I've found you! 🙏🏼
I found out this afternoon that my doctor hasn't put a referral through yet even though I'd been told he had.
A lovely lady at the referral service told me that under the NHS Patient Choice, I can say where I want to be referred to, so I will try for Bristol, Bath or the Royal Free. I know the waiting lists are horrendous but I think I'll wait it out so I can see someone who know what they're talking about!
I had another question: does anyone have any problems relating to their thyroid? I've just been diagnosed with Hashimoto's Disease. Is it related?? 🤔x
Thought I'd reply to suggest you find out if any of these specialists, other than Prof Denton who does, see patients privately. If they do then you could possibly book a private consultation and then they will move you to their NHS clinic if you're diagnosed? Just an option to consider at least.
Re Hashimoto's - yes many of us have this as it's a common autoimmune disease and these conditions tend to come along in gangs unfortunately! x
This is a whole new world for me! I'm not sure I like it that much ☹️
I spoke to my doctor earlier. He didn't know what had happened to my referral to Derriford Rheumatology but has agreed to refer me to Dr Pauling in Bristol. I'm feeling relieved! x
From my rabbit hole research - If you have a positive ANA they reflex test your ENA.
It's the ENA that will give you abit more info, many healthy individuals can have a positive ANA and be fine, ENA takes longer to come back, if that comes back positive they will then be able to give you an ENA profile. Depending on the lab this is between 4 and 6 tests.
I got my ANA back after nearly a week, few days later my ENA, 3 weeks after that I got my ENA profile.
I got an urgent referal to rheumatology in mid June with an appointment end of September, once I got all my results I did book a private consult for a few days later which was handy as I hadn't slept which put my mind somewhat at rest. But this is SE near London so more options.
So many people told me not to stress until I had all the info. When I say I didn't sleep for 4 days I'm not joking, don't stress my backside. Gather reputable information, if you can get the NHS app and ask your GP surgery for access to medical records that way you can see results as they come in. Check with GP that your lab has reflex tested your ENA, people can have very high figures (1:2080) ANA and a negative ENA, my ANA was 1:80 so lowest positive, ENA was moderate positive (5) but my profile I've only tested positive on 1 and that was +++.
So basically the figures don't nessacerily combine with severity or progression.
Was also informed by rheumatology that you can have raynauds without anything else, but if it is the start of development for scleroderma/systemic sclerosis it can take about 10 years from start of raynauds to start of disease effects.
Also, there is only a mineute genetic link apparently.
Also... (1 more 😅) we are a long way from the 90's (don't I know it!) So lots more understanding and research treatment options etc etc.
It's scary and it's OK to feel scared and worried and honestly everything else you may be feeling right now, but arm yourself with the information first, and ideally get all your blood work back before you see someone private as they can interpret it all in a bigger picture.
Thank you so much taking the time to reply (and to everyone else who has also replied).
I think a lot of my panic about this comes from the memory of my mother and how much she suffered. I have also chosen, until now, not to look back at what she went through but instead focus on all the good memories, but I'm now finding myself recalling all the sad stuff too. Sorry, I know this isn't a therapy session!
I do have the NHS App so can see my results. I'm not sure it's a good thing! It seems my ANA has been tested 3 times now (not sure why) and it's positive every time.
With a referral to Dr Pauling hopefully now sorted, I'm feeling less helpless about it all.
I'm so grateful to everyone who has posted a reply to my post. I feel very supported. Thank you x
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