do you think i may have hughes syndrome?

i are desperate for information i have many of the symptoms of hughes but a recent test has shown that the anti-Cardiolipin lgM was 50 GPLU/ml but has now fallen to 42GPLU/ml can this mean i can have hughes syndrome? i feel so ill and my doctor will not diagnose me i and am unable to work . I have constant foggy brain and loss of balance, and i am forgetfull and my speech is affected and my mussles ache and feel stiff. please help me.

i

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  • Hi

    welcome to our site. I hope we can help you. I am no expert, but sounds like you need to see a haematologist or rheumatologist, they should be able to interpret those blood results for you. Hopefully others be along with more answers for you.

    I am glad you found us. Take care gentle hugs jessielou x x x x x x x

  • I agree with Jessie you need to speak to a haematologist or rheumatologist asap. Maybe reffer to St Toms.

  • Can you not self refer through the chose and book system if your GP refuses to refer you? I know many Hospitals allow this but the wait could be longer than you would like although you would eventually be seen.

    I would write down your symptoms, print out the symptoms of Hughes from the site and go back to your GP or another in the practice, taking somebody along with you to act as an advocate. tell your GP politely but firmly you want a referral to either local/St Toms or you will take it to your PCT. I do hope that when they see how determined you are they will agree to refer you.

    Let us know how you get on.

  • GPs often do not have the range of knowledge to diagnose complex conditions, and the presence of anti-Cardiolipin lgM does not necessarily mean you have Hughes syndrome, you could have another condition.

    Was it the GP who did the anti-Cardiolipin lgM test, if so it means he may be on the right track... you need to keep going back until you persuade him to do more tests or make a referral. Or see a different GP. Think of this as a Job of Work for now.

  • thanks for your advice i have been seeing a consultant

    neurologist who after sending me for mri scans and a lumber puncture decided to listen to my concerns and did the blood test, however i dont get to see him much and find him very unwilling to make a diganoses .I keep asking my gp to refere me to someone else, he makes all the wright noises but doesnt seem to like going against the consultant. I have high blood pressure which is under control now but the Neurologist keeps saying this is my problem, but im sure its not.

    i

  • Hi hope this helps but towards the end of the book "hughes syndrome written for the patient" written by Prof Hughes it mentions the values low 0-15 medium 16-50 above 50 is high. with regards to ACL antibodies... if you got a copy of the book check it out mine at present is 87 when i clotted they were much lower so as the others say take matters into your own hands. I cant comment as to whether you got hughes or not but certainly with what you are describing it seems odd the GP done the screen and now is not acting on the findings. If you know where your blood was sent you can always get the haematologist via switchboard, take the book to your GP and show him the values written. If people are diagnosed sero negative due to clinical findings but no antibodies it seems strange to me you seem to have both. thinking of you and good luck kathy xx

  • Hi, This is similar to how I started off . I feel for you- Over many years I visited my GP-in the end I felt like I was going mad because everytime I went to my GP, I explained that I did not feel right- I was told that most people are tired because I tried to explain that I was exhausted and that my muscles hurt. Then I was diagnosed with ME-Chronic Fatigue. Then because I was frustrated with everything I was told I was depressed and put on Anti-depressants for too many years. It drove me mad then finally I lost my sight for around ten minutes and then guess what ? I was sent to have blood tests and an MRI at my local hospital and Yes results and a diagnosis at last. What a relief !!! If you are not happy, ask to see a Consultant - referral. Insist on it because your body is telling you something is not right !! Good Luck !

  • I forgot to mention-I suffer with dizzy spells headaches muscle pain and aches foggy brain etc and after being diagnosed with Hughes and even on medication I still do but worse ! My daughter is showing signs of the above and i insisted that she had the tests done. The GP took the tests and could not explain the results so I showed them to a consultant in London who told me that the GP has only done half the tests and missed out the most important one !!! So, if i were you i would ask for a referral to see a blood specialist who is an expert in this field. That is what I am going to tell my daughter to do. Sorry, but one cannot rely on GP's as they are not expected to know everything so go for it- go and see a Rheumatoligist ASAP.

  • i feel so frustrated my consultant wants me to wait 3 months for another blood test to see whether the anti bodies have raisen before he will do anything. Im feeling so ill unable to work, i just want my life back dont they understand im trying to ring st thomas up to see whether i can get a appointment

  • Hi Alan,

    I`m sorry didn`t see this before. Sorry you feeling so unwell and can understand your frustration.

    Is normal practice to do second test 12 weeks after first positive anti cardiolipin, But looks like you already had two tests. I had the same thing although I`m not positive anti cardiolipins, I have positive Lupus anti coagulants instead, and positive Ana`s.

    I saw a local rheumy who diagnosed me at one appointment, then,at the next appointment asked "who diagnosed you with APS" to which I replied "YOU DID" then I walked out, Obviously she new her stuff with Rheumatoid arthritus etc, but not too hot on APS Lupus etc. Haematologist at same hospital referred me to St Thomas`s.

    Keep trying to get to see someone at St Thomas`s. Or ask for second opinion with a local rheumy or haematologist. Keep pushing!!! You know your body and you know things are not right!!! I`m no expert but really think you need checking out properly.

    Here for you, Take care, gentle hugs Jessielou xxSheena xxx :-) :-) :-)