Where do I go now?

[ladykate]

Hi, I have only posted once previously but am now at the end of my tether and feeling really depressed. Have suffered various symptoms for about 30 years. Last year i suffered a pretty bad episode as I call it. When speaking to my doctor about it he advised it definitely sounded like a TIA and that's when he put two and two together and came up with Hughes Syndrome. Blood test were done and one showed "abnormal". He had immediately put me on Clopidogrel which has helped slightly. Referred me to Hematology but results came back negative so as I was seronnegative they basically washed their hands of me. He then referred me to Rheumatology and after a long wait I finally got an appointment last week. What a complete waste of time. The examination consisted of her feeling my muscles and then saying oh you've not got arthritis but fibromyalgia. Oh and you dont have APS as that only counts if you've had a miscarriage or a blood clot! I did explain i hadn't had a miscarriage but that was because I only had one child and didnt want any more. With regards the fibromyalgia, i said I was labelled with that about 30 years ago and am still adamant I don't have it. She basically refused me a blood test as there was no point since I had one last year with hematology. Basically I was sent away feeling that I was a complete fraud and was wasting her time. She didn't even ask me about any symptoms that i have such as Balance problems, dizziness, paralysis, memory issues, headaches, TIAs Irregular Heart beat. Where do I go from here? Any recommendations for even a private consultation with someone who knows about seronegative hughes.? Sorry If i am rambling, I am just so fed up that nobody apart from my doctor seems to want to help.

[Lure2]

I understand very well that you feel depressed at least!

You are not alone I can assure you. I should say that about 75 % of us have had an experience like yours or near by. It is so sad that it should be so very very difficult to get a Doctor who understands our illness. It is a real fight to get a Specialist.

You must try to go on looking for the right Doctor specialized in autoimmun illnesses like Hughes Syndrome/APS, Lupus, Sjögrens, Thyroidea and also Fibro.They often go hand in hand and are sort of "cousins". Often mixed together by a Doctor who is not knowledgable. Often a Rheumatologist without competence to autoimmun illnesses. Otherwise a Rheumatologist or a Hematologist are the Doctors of choice.

Yous said you were on Clopidogrel which has helped slightly. I think that is a better form of Aspirin or Plavix and they are only antiplateletdrugs and not real anticoagulationdrugs as you probably need one of those today after so many years. Also do you have high bloodpressure?

Many members have negative bloodtests from time to time and some of us also are sero-negative with negative antibodies all the time and who are diagnozed by symptoms and a family-history of these illnesses. They often run in families.

Stay here with us and we will try to help you.

Best wishes from Kerstin in Stockholm

[Lure2 in reply to Lure2]

As I usually say (hope I have not said it to you earlier) ; read Sticky Blood Explained" by Kay Thackray. She has Hughes Syndrome and writes about the different symptoms. A good book also for relatives to understand how it is to live with this illness. It is not quite new with the latest oral drugs but very good with symptoms there still are relevant.

Kerstin

[ladykate in reply to Lure2]

Hi Kerstin, Many thanks for your kind words and support. I will go back and speak to my doctor regarding anticoagulants and see if he will prescribe. I have never had high blood pressure (thankfully). Strangely enough there are 5 siblings in my family, 4 females and 1 male. The male has no symptoms but all 4 females have varied/similar symptoms. However, when we try and explain this to doctors they don't seem interested. Also on the paternal side of my family there is history of strokes, heart problems but yet again, I haven't found any doctors who really seem interested.

Again, many thanks and best wishes

Katherine

[MaryF Administrator]

Hi there, we feel your frustration, many of us have had similar. Where are you located? Did you see one of our recommended specialists? If not I can give you the ones relevant for your area in the UK private and NHS. Also Fibro, often turns out to be a low thyroid function, (the GP's and hospitals usually only do the unreliable TSH test), so many slip through the net with this and get told they have 'Fibro'. also low vitamin D, B12 and Ferriin and also Sjogrens Disease.

Regarding Thyroid tests, I do mine via the recommendations on Thyroid UK's charity website, they also have a forum on here, instead of just doing the TSH I do the around 11 tests, doing these showed up that I indeed had Hypothyrodism.

I was seronegative for Hughes Syndrome for years, which meant nobody thought to think of that, despite my history of clotting during pregnancy, but I have in the last few years passed two out of the three tests.

MaryF

[ladykate in reply to MaryF]

Hi Mary, I'm in Glasgow, but unfortunately I did not get to see one of the specialists listed. We are just allocated appointments and that it. Im sure when I asked for a second opinion at Hematology I got to speak with a Dr Baggot who basically dismissed me because I had asked for a second opinion.

I am prepared to pay privately for consultations and treatments if I have to, although I will have to save up for it but it will be worth it if I can get some help. I will also go back and speak to my doctor (Dr Gilhooly) and show him both yours and Kerstins reply.

I would be grateful if you could recommend a specialist.

Many thanks for your help.

kind regards

Katherine

[MaryF Administrator in reply to ladykate]

1. do the private thyroid testing including your B12, D and Iron If you go to Thyroid UK and look at their list of private testing available, as said my most recent was Blue Horizon, Thyroid Plus 11

The trio of disease as so frequently mentioned by Professor Graham Hughes' himself is Hughes Syndrome/APS, Sjogrens, and a Thyroid disorder. Add to this low vitatamin D, B12 and Iron and it all adds up to a difficult picture.

bluehorizonmedicals.co.uk/T...

2. Make sure you gather up as much paperwork as possible including any recent tests to form the picture, write your medical history and symptoms in bullet points etc! Here are the nearest specialists:

3. If necessary take your most articulate and firm! friend, relative, colleague or neighbour with you as back up, I have done this for people local to me, for other issues!

I enclose both NHS and Private, sometimes a private appointment can bet your NHS care back on track. I had to do this myself and others have. there is so much work to do in raising awareness.

SCOTLAND NHS – SPECIALISTS:

Dr Julia Anderson

Consultant Haematologist

Haemophilia and Thrombosis Centre

Edinburgh Royal Infirmary

51 Little France Crescent, Old Dalkeith Road

Edinburgh, Scotland EH16 4SA

Telephone: [phone]

_______________________________

Dr Catherine Bagot

Consultant Haematologist

Department of Haematology

Glasgow Royal Infirmary

84 Castle Street, Glasgow, Scotland G4 0SF

Telephone: [phone]

_______________________________

Dr Colin Baines

Consultant Rheumatologist

Medicine and Cardiovascular Group

Ninewells Hospital and Medical School

Dundee, Scotland DD1 9SY

Telephone: [phone]

_______________________________

Professor Jill Belch

Consultant Rheumatologist

Medicine and Cardiovascular Group

Ninewells Hospital and Medical School

Dundee, Scotland DD1 9SY

Telephone: [phone]

_______________________________

Dr Jenny Boyd

Consultant Obstetrician

Department of Obstetrics

Whyteman's Brae Hospital

Kirkaldy, Fife KY1 2ND

Telephone: [phone]

Dr Alexander Doney

Consultant Physician

Ninewells Hospital and Medical School

Dundee, Scotland DD1 9SY

Telephone: [phone]

_______________________________

Dr Douglas Gentleman

Clinical Director

Centre for Brain Injury Rehabilitation

Royal Victoria Hospital

Jedburgh Road

Dundee, Scotland DD2 1SP

Telephone: [phone]

_______________________________

Dr Helen Harris

Consultant Rheumatologist

Department of Rheumatology

Fife Rheumatic Diseases Unit

Whytemans' Brae Hospital

Kirkcaldy, Fife KY1 2ND

Telephone: [phone]

_______________________________

Dr Rajan Madhok

Consultant Rheumatologist

Department of Rheumatology

Glasgow Royal Infirmary

84 Castle Street

Glasgow G4 0SF

Telephone: [phone]

_______________________________

Dr David Marshall

Consultant Rheumatologist

Department of Rheumatology

Inverclyde Royal Hospital

Larkfield Road Greenock

Scotland PA16 0XN

Telephone: [phone]

Dr Martin Perry

Consultant Rheumatologist

Department of Rheumatology

Royal Alexandra Hospital

Corsebar Road Paisley

Scotland PA2 9PN

Telephone: [phone]

_______________________________

Dr Judith Roberts

Southern General Hospital Maternity Unit

1345 Govan Road, Glasgow

Scotland G51 4TF

Telephone: [phone]

_______________________________

Dr Robert Campbell Tait

Consultant Haematologist

Department of Haematology

Glasgow Royal Infirmary

84 Castle Street

Glasgow, Scotland G4 0SF

Telephone: [phone]

_______________________________

Dr Asad Zoma

Consultant Rheumatologist

Department of Rheumatology

Hairmyres Hospital

East Kilbride, Glasgow

Scotland G75 8RG

Telephone: [phone]

SCOTLAND - PRIVATE SPECIALISTS:

Dr Helen Harris

Consultant Rheumatologist

The Edinburgh Clinic

40 Colinton Road

Edinburgh, EH10 5BT

Telephone: [phone]

Dr David Marshall

Consultant Rheumatologist

Ross Hall Hospital

221 Crookston Road

Glasgow G52 3NQ

Telephone: [phone]

_______________________________

Dr Asad Zoma

Consultant Rheumatologist

BMI Ross Hall Hospital

221 Crookston Road

Glasgow, Scotland G52 3NQ

Telephone: [phone]

MaryF

[ladykate]

Hi Mary. Many thanks for all of your help and information. I'll get onto things and hopefully get back on track to finally finding a solution to my issues. Just knowing this forum is here really helps

Kind regards

Katherine

[Lure2]

I wish you good luck to find your Specialist! The Doctors are not interested because they do not understand our sticky blood and Doctors do not like when they do not "get" what the patient says.

Tell us how it goes for you!

Kerstin

[MrsM1988]

Hi Ladykate

Ask your gp to refer you to Dr Madhok at Glasgow Royal Infirmary. He is a fantastic Consultant Rheumatologist. I was a patient of his for many years I have SLE and APS. I moved house so transfered to Dr Crosby Consultant Rheumatologist at the Queen Elizabeth. Hope you get the help you need.

Mrsm1988

[ladykate in reply to MrsM1988]

Hi, many thanks. I will ask my GP to refer me to Dr Madhok.

[GinaD]

Your observation that the females and your family had issues but not the males really struck a chord with me. In my family, after many lives and decades a futile searching, it has bern semi- officially established ( meaning some drs but not all) that us superior, female Donahue descendants pay for our superiority via a hormone imbalance. Now that I have passed menopause, I am no longer affected. But prior to that I finally had a doctor who prescribed a locally compounded progesterone cream. and boy did that stuff ever make me feel wonderful! and some autoimmune diseases such as lupus – and recall that APLS is often related to lupus – are driven into flares by estrogens.

[ladykate]

Many thanks for the information. Much appreciated

[Tofino5]

Don't give up, many of us have had similar experiences but please keep trying to find answers. What a lot of fantastic information and encouragement in the previous responses. Good luck.

[ladykate in reply to Tofino5]

Many thanks. Yes everyone is so helpful and encouraging.

[Manofmendip]

Hi and welcome.

My colleagues have given you good advice, which I concur with.

Dave

[ladykate in reply to Manofmendip]

Many thanks.