APS Specialist

[Kazzapeaky]

Could anyone recommend a consultant in the Midlands specialising in APS please? I tried to book with Dr Sue Pavord but she has left the hospital in Leicester.

[MaryF Administrator]

Please take a look on here: hughes-syndrome.org/self-he...

MaryF

[Kazzapeaky in reply to MaryF]

Hi Mary

I did go on there which is where I found Sue Pavord but wanted to know if anyone recommended anyone in particular in the Midlands area or whether I would be better going to London where they deal with APS more frequently? I have many minor symptoms like headaches, joint pain, ulcers, rashes, dry eyes, hearing problems, brain fog,, fatigue but not major events like DVT, stroke, miscarriage etc.

Thanks

Karen

[MaryF Administrator in reply to Kazzapeaky]

Some do end up going to London, maybe your GP would refer, or you self refer and go privately to London Bridge, but if you take that route get your GP to do full blood tests for Lupus and Hughes/APS, plus full Thyroid panel, also D, B and iron etc to keep costs down. MaryF

[Kazzapeaky in reply to MaryF]

Thanks Mary. My rheumatologist and Neurologist diagnosed APS Chronic migraine, idiopathic hypertension and hermicrania continua but admitted they don't know much about APS which is why I thought I should see someone who does. My optician and the GP have recently suggested Sjögrens is a possibility. If I make an appointment in London should I ask them which blood tests to do before I go?

[Kazzapeaky in reply to MaryF]

Thanks so much for your help. I have an appointment now at London Lupus Centre with Professor Munther Khamashta. I am going to ask my GP for blood tests on your good advice. I will let you all know how it goes in case it can help anyone else.

[Lure2]

Hi, You have got a diagnose. Now you have to get an APS-Specialist.

It is better you go to London to get a doctor that knows the symptoms and also other autoimmun disorders that can be connectived with APS like Thyroid and Lupus or Sjögrens.

A diagnose and an APS-specialist are the two most important things to have regarding this illness.

Good Luck from Kerstin in Stockholm

[Kazzapeaky in reply to Lure2]

Hi Kerstin, thanks for your reply. yes getting the diagnosis took quite a few years but now I have been diagnosed with APS Chronic migraine, idiopathic hypertension and hermicrania continua but the rheumatologist admitted that she doesn't know much about APS which is why I thought I should see someone who does. My optician and the GP have recently suggested Sjögrens is a possibility. This is why I decided an APS specialist was needed.

[Lure2]

Mary and I answered at the same time. Better do as she says as she knows so well what to do in your situation.

Kerstin

[Tinythepanda]

I have been referred from my current rheumy to professor caroline Gordon at birmingham city hospital. She sounds very well versed in this condition.

I also have many aps symptoms but no proven clot and intracranial hypertension. I'm looking forward to see her but if I have no joy and get no further forward I'm intending to go private to london bridge.

[Lure2 in reply to Tinythepanda]

Yes, it is so very important to have an APS-doctor with this illness.

Hope you go to London and best wishes also!

Kerstin in Stockholm

[Kazzapeaky in reply to Tinythepanda]

Thanks for your reply, good luck with Caroline Gordon, let me know how you get on. . I have an appointment now at London Lupus Centre with Professor Munther Khamashta. will let you all know how it goes.

[Kazzapeaky]

I only take aspirin daily at the moment.

[Kazzapeaky]

Thanks so much for your help. I have an appointment now at London Lupus Centre with Professor Munther Khamashta. will let you all know how it goes in case it can heklp anyone else.

[chrissybell in reply to Kazzapeaky]

I too am under Prof Khamashta - he's lovely and really knows his stuff.

[Kazzapeaky in reply to chrissybell]

That's good to hear. Thank you

[Squeezer]

Dr Gill Swallow was trained by Dr Pavord and she works at the QMC in Nottingham as part of Dr Gerry Dolan's Haematology team.

I hope your appointment in London goes well and that you find someone more local to you to continue with your care.

Hxx

[Kazzapeaky in reply to Squeezer]

Thank you x

[Hidden]

Where is Dr Pavord nowadays?

Good luck, kazza!

[Squeezer in reply to Hidden]

She has moved to Oxford. Not sure which hospital she is at now.

[Hidden]

I see, thank you Squeezer, it seems a lot of elite consultants and researchers working in Oxford. Wishing her well.

Take care and enjoy your weekend.

[Heather69]

Hi,

I previously lived in the West Midlands and was under Professor Gordon at the City Hospital Birmingham. She was excellent.

Would highly recommend her.

[Hidden]

I live in the midlands but found it difficult to find one so therefore I travel to london to see the best. I don't feel confident with anyone else !

[Tinythepanda]

It's been a few months since you posted but wondered how you got on at London bridge?

I have seen prof gordon twice since then and she is nothing short of amazing. If you need a local consultant I can't reccomend this incredible lady enough