Yorkshire specialists

[stargazer5761]

Can anyone recommend an aps specialist in Yorkshire . Been to one I Harrogate but he don't specialise in aps . There's one in leeds but he only sees private patients . . Spoke to the Secretary in Sheffield and she didn't know if he sees aps patients or not . These are off the hughes list

[Elfie1]

Hi ,I see Prof. Emery in Leeds (chapel Allerton Hospital).I'm not sure if he a is on the list of asp. Specialists ,but he certainly looks after me.He diagnosed me straighT away and got on with the treatment . Hope this helps. Elfie

[stargazer5761 in reply to Elfie1]

Thanks for going to get my doctor to refer me . Let you know how it goes x

[Elfie1 in reply to stargazer5761]

Ok you're welcome ,let me know how you get on. All the best Elfie

[MaryF Administrator in reply to stargazer5761]

I am really pleased to hear about your avenue for a new specialist. MaryF

[Hidden in reply to Elfie1]

Thanks Elfie1 - I will write to Prof Emery as he is not on the Hughes Syndrome Foundation's APS specialists list yet. Always good to have more doctors listed

Best wishes,

Kate Hindle

Manager HSF

[MaryF Administrator in reply to Hidden]

Great idea, I am glad you are keeping a close eye on the posts as I don't always have the time to send stuff over to you as our work load is now increasing. MaryF

[Ray46]

There aren't any, as such, and definitely none on the list, unless you go private.

However, the rheumatology team at Chapel Allerton (under Prof Emery) are experienced in APS and see and treat a lot of APS patients and seem to know a lot about it - but there doesn't seem to be any one APS specialist. They used to have a website which had some "what do we treat" info which included info on APS, but that site seems to have disappeared now (or I can't find it at least) and there is just a single rheumatology page on the leeds trust site which is not so helpful.

I think you want the "connective tissue disorders" clinic - that is certainly what I was referred to. They run a multi-disciplinary clinic so you may see neurologists and nephrologists (kidney doc - for suspected APS nephropathy in my case) as well as rheumatologists (and probably other specialisms but that is who I've seen), as needed and all in the same consultation, which is useful. Saves you being shunted around departments and playing he-said/she-said between consultants - you get them all in the same room at once (or at least I did) - and they all know APS. Haematology is _not_ there as far as I know, but Leeds haematology were pretty much useless on APS in my experience.

Beware that that team/clinic is overbooked and there are long waits for appts and to be seen on the day, but I felt it was worth it. Also beware the car parking is useless, way too small and always full - I always park in the side streets and walk now.

[stargazer5761 in reply to Ray46]

Thanks for that .. I have hot a referral with of of of emery

[Elfie1]

Hi again don't be put off by the long waiting times,there are always lots of doctors to share the load. You will be seen by Prof. as a new patient anyway. As for car parking I drive from Scarborough and I've never not found a space. Best wishes Elfie.

[stargazer5761 in reply to Elfie1]

Nah I don'tin how long I wait as long as I get seen by some one that knows the condition . Been pushed around a bit seen different people . Hopefully this guy will get me sorted

Many thanks for the recommendation . .let you know how it goes x

[Debbweb01]

Hi I live in USA and its hit or miss here! I get a list of Rheumotologists and Hemotologists and call all of them! Maybe I'll b lucky enuf to get one or two who knows about APS! I've even gone to a Rheumy that said he knew, but I gave him the test and he failed! I even brought my positive test for Sjogrens from my eye doc and this Rheumy tells me oh well u don't have Sjogrens! I told him to flip the page and he'll see 3-4 tests that were positive! He did and then I akes him if he'd put me on Plaquinil! He said maybe! Then I told him something and he answered wrong! Then I gave up and started my search all over again! My sister also ha it and she had to get the list of what tests her doc shud take cuz he knew nothing about it at all! To his and her surprise she tested positive! My sis and I are very different personality wise, but both allergic to same things and both have same allergies, plus many stomach problems! I hope u get to b seen fast! I go to a new RHEUMOTOLOGIST in a couple of weeks! They did say he knows about APS? We shall see! In USA our health care is a mess and I recently found out I'm being dropped by my current great and expensive insurance! So here goes my search again! Good Luck and I'm glad Elfie was able to help u so much! This forum is like family to me! They really care! Contact me anytime you feel the need to for anything! Godspeed!

[Lesley61]

I am seeing one in Manchester she so good I am from Huddersfield been to Sheffield and Huddersfield and Halifax no good at all did not listen to you or just got rid of you only seen one in Halifax she was good but was having a baby but cos I live in Huddersfield I only ever 6 mouths now try there