Advice

[Sevenstar]

Hi there , please can anyone recommend an APS specialist in the Warwickshire area?

Also , as I'm quite new to this can anyone help me with some weird symptoms in my legs , occasionally but not all the time , they feel ice cold , especially the thigh area in left leg , they feel like my jeans are too tight all the way round the legs but not like the sensation you get with intermittent claudication!

Thank you guys , appreciate any help !

[MaryF Administrator]

Hi, people on here may respond with who the see, in the meantime. 1. Professor Caroline Gordon Consultant Rheumatologist Department of Rheumatology City Hospital, Dudley Road, Birmingham West Midlands B18 7QH Telephone: [phone]

2, Dr Will Lester Consultant Haematologist Department of Haematology Queen Elizabeth Hospital Birmingham Queen Elizabeth Medical Centre Edgbaston, Birmingham West Midlands B15 2TH Telephone: [phone]

3. Steve McKew Consultant Rheumatologist Department of Rheumatology Royal Shewsbury Hospital Mytton Oak Road, Shrewsbury Shropshire SY3 8XQ Telephone: [phone]

4. Dr Siobhan Quenby Consultant Obstetrician University Hospital Coventry Clifford Bridge Road Coventry, West Midlands CV2 2DX Telephone: [phone]

5. Dr Benjamin Rhodes Consultant Rheumatologist Department of Rheumatology Queen Elizabeth Hospital Birmingham Edgbaston, West Midlands B15 2TH Telephone: [phone]

6. Dr Deva Situnayake Consultant Rheumatologist Department of Rheumatology City Hospital Dudley Road, Birmingham West Midlands B18 7QH Telephone: [phone]

We are lucky that various charities and indeed this forum over the nearly ten years it has been around, has collected the names of specialists, many of them given to us by the actual members on here.

MaryF

[Sevenstar in reply to MaryF]

MaryF ... how very kind of you to get back to me so quickly, it's good to know there are a few in the area, I will make some enquires now ! Really appreciate your help 🥰

[Ageingfemale]

Hiya. I live in Warwickshire (Stratford). When I was first suspected to have APS I saw a haematologist from Warwick hospital and she said she was referring me directly to London (Guys and St Thomas) as they knew more about APS than anyone. So I travel on train for my appointments. Recently, the past 12 months really, they have done telephone consultations which have been good, meaning I only go down perhaps once a year, unless I am having problems then they see me.

[Sevenstar in reply to Ageingfemale]

Hi there , well interestingly I also live near Stratford, small village just outside! Yes telephone consultations are the only thing we can do at the moment, maybe when things improve I can finally get somewhere! Do you mind me asking how long ago you were diagnosed and what treatment you use ?

Thanks for the reco!

Take care 🥰

[Ageingfemale in reply to Sevenstar]

Hiya, I had mitral valve stenosis and had open heart surgery to replace the valve. Unfortunately they couldn’t wake me up and I was in a coma for a month! That was 6 years ago. So I was on warfarin for that and the heart surgeon said inr had to be higher at 3-3.5. Then I started having TIA’s and the stroke consultant started to talk about APS so he referred me to a haematologist. She was brilliant. Warwick path lab and Coventry path lab both said I would have to stop warfarin before tests could be carried out. But she argued with them saying they could test whilst on warfarin as she was looking at it on the screen!! So she sent me to London. Apparently they carry out the test using snake venom!! The tests came back positive (repeated after 12weeks). So it’s been about 5 years now since diagnosis but they say I’ve had symptoms for about 20 years. It was the APS that caused my valve to deteriorate. Aortic valve is now deteriorating. The coma could have been catastrophic APS. I now have kidney disease and 2 lung conditions all probably due to APS. I’m afraid I take 27 tablets a day 😱the main ones for APS are warfarin, clopidogrel. Hydroxichloriquine. I now see a rheumatologist in London and a neurologist. I also go to London for the lung conditions (interstitial lung diseases) the consultant there was great and explained she would get in contact with all the consultants and they would have a multi disciplinary meeting to decide treatment going forward. It makes such a difference to have somebody who knows about APS rather than different consultants trying to treat one individual problem. My inr now is 3.5-4.5. I always feel great about 4.2. I’ve had about 17 Tia’s and so now they are investigating a possibility of epileptic absences rather than all being Tia’s. It’s never boring having APS. !!! My balance is awful now and so I use a walker when out. (Or I did before covid! Both my husband and I are shielded. He has MS and is bed bound apart from 2 - 3 hours a day. I am his main Carer although we have Carers in 4 times a day to help. Okay so now I’ve written an essay I’ll shut up 🤐 x

[Sevenstar in reply to Ageingfemale]

Oh my goodness, what a busy old time you've been battling through and still sounding cheery , I have found I've had some very down days especially before diagnosis! I think I pitched up at my GP's so often I could almost hear the eye rolls !🙄

Anyway, this site has been a godsend as I seem to think of questions almost every day and it's a comfort to know other people are in the same APS boat !

Stay well and as they say 'keep taking the tablets ' !

Thanks for your input it's appreciated !

[Hidden]

Can confirm what MaryF said about Caroline Gordon's team at City Hospital and Will Lester at the QE. I've been under both for many years. After being under the St Thomas's team too, I can say they are as good, and have a great multidisciplinary team working alongside them. I get referred by them into neurologists, opto-neurologists, nephrologists, and neuro-psychiatrists, plus the Memory Clinic, who all work alongside them and have an interest or experience in APS, for various symptoms.

Gordon and Lester often share patients even though at different hospitals, so you'll probs be under both. Lester is pretty much like Beverley Hunt. Incredibly patient friendly and knowledgeable. Also very open. He got me on to self-testing my INR, with emailing in my INR rather than phoning, such that I could test and get dosed by them from anywhere in the world (I travel a lot for work); I've done it from some pretty remote places ranging from the Sudanese border in desert outports, to high up in the mountains (there seems to a be cell tower everywhere nowadays).

More recently, he's moved me to 'self-management', where I'm allowed to dose myself as well as self-test. He also has a great team of anticoagulant nurses whom you can contact at anytime, and are very proactive with symptoms and management. I found the set up better than St Thomas's. Almost too proactive: they really get on at me if they are not happy with how I'm doing, in a nice way.

On top of that Gordon and Lester's team have great postdocs and registrars working under them. Such that even if you don't see them, then the people on their team are all very good, and up to date.

Highly recommend them. Best thing is to get a referral into Gordon's unit by your GP (as she deals with a wider range of unusual APS symptoms), and she will decide whether to share you with Lester to not.

[Sevenstar in reply to Hidden]

Oh my goodness what a lot of valuable info , thank you so much peakydesk, indeed thank you all so much for this , really helpful! I have so many questions for my Doc now , I'm fascinated by what you term as the wider range of APS symptoms, I have a long list of those and would love to swap symptoms stories one day with all you guys !

[Sevenstar in reply to Hidden]

Peakydesk .... thank you for all this info also thank you MaryF, tomorrow I'm going to ask GP about a referral to Birmingham City/QE as I'm now having a lot of scary neuro symptoms! As I need the Neurologist quite quickly , do either of you have any names on the team that I can give to my GP?

Thanks in advance

Appreciate your input !

[Hidden]

For example, I would have problems with my vision. It was 'off'. Opticians couldn't fix it up. I mentioned it to Gordon and straight away she knew it was an APS / autoimmune issue. So referred me into the neuro-opthamologist at the Birmingham Eye Hospital, who is familiar with APS, and just a three minute walk across the car park from her clinic. She also has extensive knowledge and experience of various related autoimmune type diseases. So she tested me thoroughly for a good number of conditions.

Once all the initial tests are done, and everything is kind of stable, then you only need to go in once or twice a year, which from Warwickshire isn't too much of hardship. Especially if you home/self test with the warfarin, if you're on that.