Need APS doctor in Sutton Coldfield n... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Need APS doctor in Sutton Coldfield near Birmingham.

Vespa1 profile image
19 Replies

My husband has been confirmed as having APS after a 3rd recent stroke. He was evidently confirmed as having the antibodies 6 yrs ago! But info was not correctly passed onto ourselves. He takes warfarin but it is being very erratic. He was discharged from Sandwell hospital with no follow up. I am now trying to get us back in the loop as we have never spoken to any specialist about his blood. Is there anyone who can suggest which type of specialist we need to see regards his blood and hopefully preventing any further strokes. We have seen stroke specialists but feel the cause has not been fully followed up. We are prepared to pay and travel.

Yours hopefully..

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Vespa1 profile image
Vespa1
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19 Replies
MaryF profile image
MaryFAdministrator

Hi, you could if you want a private appointment travel to The London Lupus Unit, London Bridge, taking all your recent blood tests done by GP, the more recent the better, also check Thyroid status, also levels of D, B12 and Iron. Also here is the list off The Hughes Syndrome Foundation charity website: hughes-syndrome.org/self-he...

It is in your GP's interest as well as your's and your husband's interest that local care is guided with the correct specialists knowledge. Let us know how you get on, come back to me if you need further help. MaryF

Vespa1 profile image
Vespa1 in reply to MaryF

Thank you not sure whether haematologist or rheumatologist consultant best can you advise as to their various specialism within APS?

MaryF profile image
MaryFAdministrator in reply to Vespa1

Hi, the list says what the personal specialism is for each specialist, however others on here may give you localized feedback which will help your choice. MaryF

Manofmendip profile image
Manofmendip in reply to Vespa1

Hi. It is often down to the individual consultant, rather than just their discipline.

I was, unusually, diagnosed by a neurologist, then seen by a Haematologist and finally by Prof Hughes (Rheumatologist).

Dave

tim47 profile image
tim47

It might be worth a mention to the stroke doctor, that they might want to check your husband does not have a hole in the heart. I had one that was only discovered after multiple TIAs. I had previously had a stroke. My condition went undiscovered for 60 odd years despite several heart examinations including the tiny camera. I have had Hughes Syndrome for 40 odd years.

About 20% of the population have a hole in the heart and normally it isn't a problm- but of course it can be if you have Hughes Syndrome/APS.

Closure of the hole (Patent Forament Ovale aka PFO) is now relatively simple- and no TIA's since.

danluc profile image
danluc

I am curious. Did he test positive before or after his first stroke?

Vespa1 profile image
Vespa1 in reply to danluc

Teated positive after his 2nd stroke. no test done prior to that as far as we are aware. No one ever followed it up and it was said as passing remark which unfortunatly we were not aware of the seriousness of it. Why do you ask?

danluc profile image
danluc in reply to Vespa1

Because I tested positive 3 times and have never had any major events. Have a lot of APS symptoms that prevent me from working. Just wondering who else is like me out there.

cyberme profile image
cyberme

hi , i live just outside birmingham , but travel down to st thomas s to see prof hunt, i personally have found in my experience not very convinced but the doctors ive seen up here, but i may be wrong, personally ive not found anyone to look after me, they normally say... as your seeing a doctor in london they dont need to see me, i had my first stroke 10 years ago, had 5 by time diagnosed and heart and everything else problems, i keep my inr at average 4, im 48 now, best wishes to you hope you get the appropriate help soon x

Vespa1 profile image
Vespa1 in reply to cyberme

Thank you. I think I getting the message that his INR needs to be higher than drs we have seen so far have said. Thinking of buying new Roche testing kit but want to make sure they keep him on warfrin first due to cost.

Vespa1 profile image
Vespa1 in reply to cyberme

Hi sorry to hear about delay in diagnosis, it seems to be common.

Can I ask how you got an appointment down at st Thomas's because that would be great to speak with them.

cyberme profile image
cyberme in reply to Vespa1

Hi sorry for late reply, i was originally diagnosed with Hugh s by a neurologist at the QE , but continued getting worse as not given the correct treatment so with my better half asked my doctor to PLEASE write to st thomas to see if they would give me an appointment, my doctor wrote and i got an appointment for 6 weeks later , hope you get some good care

Tinythepanda profile image
Tinythepanda

Hi, I see professor gordon at City hospital in birmingham and she is excellent.

If you need someone closer one of her colleagues Dr. Situnayake runs a clinic at the ash furlong medical

Practice in sutton.

Vespa1 profile image
Vespa1 in reply to Tinythepanda

Thank you that is just around the corner from us. Will look into it.

Yes, Professor Caroline Gordon is among the best experts on APS in the country. She knows all of the teams in London including St Thomas' and UCL. I hope you can get an appointment :)

Thanks for letting us know about Dr Situnayake TinythePanda - they're not on our list so I will write to see if they are happy to be included.

Vespa1 profile image
Vespa1 in reply to

Going to doctors tomorrow so going to ask for a referral. Will keep you posted. Thank you

Vespa1 profile image
Vespa1

Can you say why you would go to London Bridge? Is it a clinic that specialises? All these names are new to use and trying to get the best advise as obviously previous advise from doctors not enough.

Thank you for taking the time to answer it's all brilliant.

Vespa1 profile image
Vespa1

Thank you we are due to see a stroke specialist next week and I will be asking for a referral to APS specialist so taking all info I have gained from this forum with us. Fingers crossedx

ferry17 profile image
ferry17

hi vespa 1

i write on behlf of my wife shes been dignosed with APS we live in birmingham she was sent to a rumertogilst ( blood expert i think ) Dr Khan ? if i recoil at good hope she was good to talk to if helps

regards

Ferry17

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