Tests back negative.

[vine55]

Hi, so all the tests came back negative. I am really happy about that but have a few niggling worries. The consultant said that "he didn't believe in the syndrome and in any case would not do anything about it" What I want to know is what is causing my symptoms - migraines, muscular problems, numb hands, breathlessness - I could go on. My main worry is another pulmonary embolism, the consultant said I would be much more prone to another one. Why?? I do not want to appear needy but I want to be proactive about my health!

[MaryF Administrator]

I agree with the reply carefully written above: Please take a look at this article: ard.bmj.com/content/62/12/1... Please let us know where you are located so we can suggest further help if possible. Mary F x

[Annslack]

I agree too. I am tempted to be much despite about your consultant. He clear doesn't know. enough about this condition to be safe treating you. Hope you see someone more suitable soon. If you feel able to do so it would be great tp send him some information . Ann

[bernieembleton]

Hi, you really need to find another doctor. Do not give up. Your health is your upmost priority. Good luck x

[Holley]

Please see another specialist ASAP! Where do you live?

Lisa

[vine55]

Hi, thank you for all your replies. I am based in Hove near Brighton. I really don't know whether to go any further with this. I have been made to feel that I am wasting doctor"s time. How do you know if you are suffering from Hughes syndrome or not??

[Jane-Martin in reply to vine55]

Hi hon, You really must follow through and see another doctor. The doctor you have seen is wasting your time! You have had a clot and are suffering other symptoms which indicate Hughes. Blood tests are important, but bearing in mind the blood tests are limited to those the doctor orders and to the tests we have available at this present time. If this specialist doesn't even agree with the syndrome existing, did he even take the correct tests!

If the correct tests are taken and are negative and the patient has symptoms of Hughes, the doctor may wish to put the patient onto treatment for Hughes and see how the symptoms respond. You can read about zero negative Hughes Syndrome on the Hughes site. You will also see the tests available for Hughes at this current time. Take a look and see if these were the tests your doctor tested for.

My sister was told she tested negative for many years. Each time she would send the test through to me and each time, I saw that she had NOT been tested correctly. Very frustrating, but she eventually saw Professor Hughes, got onto treatment and her debilitating symptoms improved.

Please check for doctors on the Hughes web site and go and see one. I wish you well. Love Jane xx

[Hidden in reply to vine55]

The consultant at the Royal Sussex in Brighton is Prof Kevin Davies - he sees many APS patients. Was the consultant you saw a neurologist? As I really can't see any haematologists or rheumatologists saying such as thing. I know there was something published twenty years ago in a neurologists' journal which made them doubt the existence of APS, but things have moved on a lot since then ...or so I thought!

[vine55 in reply to Hidden]

I did not see Kevin Davies. I actually saw one doctor prior to tests. She seemed very thorough and ordered many different tests - bloods and ultrasound. Subsequently I saw someone different. Maybe they are right - I don't have the syndrome. I am just in two minds as to whether I accept the diagnosis or press further. I think I will just hold tight and see how things go.

[judes in reply to vine55]

Hi Hon

Can't offer any more than others have said, but I am just down the coast in Sunny Worthing if you fancy a chat e mail

Judes

[Loopy106 in reply to vine55]

My auntie died in Worthing hospital from Hughes x get a new doctor x I have all the signs of having it but test negative for it but have tested positive for JAK-2 which is to do with thick blood (clots) x don't give up I am glad I didn't x let me know how you get on x e-mail me [e-mail] x I understand how you feel x

[vine55]

Thank you for all your advice which I am really thankful for.It is really difficult to get the right balance between what the experts say and what is reported on this forum. I don't have the strength or am I convinced enough to question "the experts". I will monitor my symptoms over the next few months and hope that I am keeping myself safe.

[Silent1]

At first all I had were a few low level cardiolipin antibodies and now is full blown. I think at the minimum keep yourself hydrated, take an aspirin at 325 mg per day and get plenty of rest and some exercise. This disease is dangerous to let go...been the and done that.