When first seeking a dagnosis for APS is it better in the UK to see a Consultant Haematologist first or a Consultant Rheumatologist? Julie99

[julie99]

[jessielou]

Hi Julie

welcome and glad to meet you.

I was initially referred to rheumy after gp did bloods that indicated lupus, said rheumy at 2nd appointment diagnosed me with Hughes and fibro, 3rd appointment, her opening words were, "who diagnosed you with Hughes syndrome" My reply "you did!" she discharged me saying theres nothing she could do about fibro, then decided to refer me to haemo in same hospital. Thankfully haemo admitted to not knowing much about Hughes syndrome, so referred me to Louise coote lupus unit at st thomas's in London.

Highly recommend st thomas's if can get referral, not sure how private works. Others will be along with more info I'm sure! 2nd visit to st thomas's i got diagnosis Hughes syndrome, with lupus symptoms and fibro. Now being treated and getting a little better!!

Sadly many medical professionals around the country have limited knowledge of Hughes syndrome. Although there are centres around the country that have better knowledge.

I hope your gp is helpful.

Hope you feeling well today.

Take care gentle hugs sheena xxxxxxx

[julie99 in reply to jessielou]

Thanks Jessielou for replying so quickly! I'm sure that going ti St Thomas hospital would be best, but I live in Liverpool and because of a chronic spinal condition which means I can only travel lying flat in a stretcher ambulance! Getting to London woulyid not ne an easy task, though it may be necessary eventually. We have an active haemo day case unit at the Rpyal Liverpool hospital and thought they may have a Consultant Haemotologist who knew about APS. I'm still checking this!

[jessielou]

Hi Julie

I had quick look at royal Liverpool haematology unit. Looks pretty good. Surely one of there haemo's must know about aps. prof c h toh, Dr salim both consultants who deal with clotting n other blood disorders, doesn't specifically mention aps, but may be worth ringing their secretaries.

I wonder if anyone on here any experience of royal Liverpool haematology??

I hope you can find someone!!

Hope you feeling well today

Take care gentle hugs sheena xxxxxxx

[london-lass]

Hi there

I would think it depends on symptoms. When I was diagnosed i was referred to both a rheumatologist and a haemotologist. Being in the medical field, I felt the rheumatologists could not offer anything other than drugs, so I declined the offer, and just see a haemotologist, as I only have primary Hughes which is a blood disorder.

Take care

[julie99 in reply to london-lass]

Thankyou londonlass and MaryH. I only joined this forum last week and am amazed at how kind and supportive you all are. I hope I can be so to all of you also!. Best wishes and hugs JP

[MaryH]

In 2006 I had a stroke and after seeing the Neurologists they diagnosed APS. They then referred me on to the Rheumatologists. I have seen a few of the rheumatologists at my local hospital and all I have got is "Who diagnosed you?" and a general uncertainty regarding the diagnosis. I feel that seeing the haemotologists would be better as they deal with blood problems and that is what I have. Since being on warfarin I feel much better. Good luck x

[taffydaffy]

I became ill after the birth of my 3rd baby in 1983 it took 17 years to DX me i was told

I was fat

I was Mad

I was to thin

not havin sex lol

I started with many visits to my G.P I asked to be refered to Bath R.H Hospital they dx me with sticky blood and Post Viral Syndrome Prof Bory in Cardiff they told me I was mad after all this hell my hubby demand to be refered to St Thomas and i saw Dr G.Hughes told me i had sjogren's and after blood tests and brain scan dx multiple tia's Apls/Lupus / Fibro thank god for St Thomas never ever give up

[Stella]

It obviously depends on the individual rheumatologist's knowledge but I found the rheumatologist at my local hospital completely useless. It was only when I was referred to St Thomas's by a neurologist that I got anywhere at all. I am seen regularly at the haematology department who are extremely helpful in so many ways as they are experts in Hughes syndrome. I would therefore recommend the haematology route. If your local hospital does not know enough then get them to refer to St Thomas's (Prof Beverley Hughes) for advice. Best wishes, Stella

[julie99]

Thank you taffydaffy and Stella. I think from everyone's experiences so far the Consultant Haemotologist route is the way I'll go. You have all been so helpful. My heart goes out to you taffydaffy for the insulting "diagnoses" you had. Thank goodness St Thomas' sorted it in the end. It may be that's where I will have to go eventually, and it will give me hope that I have that option still. Best wishes and hugs to all. JP

[london-lass]

Hi there

It is actually Professor Beverley Hunt, not Hughes, but an easy mistake.

[Herb]

When seeking a diagnosis it is always better to keep an open mind.

The person to make a diagnosis should be the person who is the most knowledgeable about a person's symptoms.

In the case of APLS this would usually be a rheumatologist, a haematologist, or a neurologist.

Sometimes a person would have to see all 3 to exclude ailments which present similar.

Bearing in mind Lupus is known as the great pretender as it mimics so many other disorders (many people have APLS secondary to Lupus), and the symptoms which may appear to be caused APLS can also be caused by a number of conditions.

[julie99]

Thank you Herb. Your point about maybe having to see consultants of different specialisms is a good one. Thanks to everyone's input, I've now asked my GP to refer me to a Cosultant Haemotologist as a first step. I was really floundering before I came to this forum but you guys helped me to focus. Thanks to everyone!