anyone been through the same

i had high anticardiopolin levels in 2007, started having grand mal seizures for 2 years, took me off asprin in 2010, then started having complex partial seizures till may 2012. not told after blood test in march 2012 that anticardiopolin level was over 120, end of may 2012 had ischemic finger and chest pain, put on warfarin managing to keep inr 2-3 not had seizure for last 12 weeks. have been confirmed in writing today that i have hughes syndrome.

been told for last 5 years i had epilepsy and get used to it. do i have any grounds for mis diagnosis ? feeling let down. anyone been through the same

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  • Hi there... if you read through various posts.. you will see that it is terribly difficult at times to get a diagnosis... and some like myself test seronegative and still have Hughes.. I am so pleased that you have your diagnosis.. and what it shows is how much work has to be done in the UK to educate the medical profession. Certainly in my own case, I have put my anger with the frustration about having 5 undiagnosed conditions to good use. I politely and firmly educate anybody involved with me or the children with papers, information, films etc etc. As unfortunately complaints usually end up draining the patient of any energy they may have left... as ultimately the DoH is huffy and defensive, this should not be the case of course.

    It often appears that neurologists do not know or understand Hughes Syndrome. I hope this answer is of some help to you... and it will ring many bells for many people.

    I hope you will now have the correct medical support and help in place and that you are shown real kindness with this.

    I have clearly had Hughes and SLE Lupus since a teenager, (only diagnosed in last two years and now 47), despite serious clinical incidents... now sjogrens, psoriatic arthropathy and hypothyrodisim. All my care good now, and any along the way who were awful have in my mind been placed in file 13.

    Best wishes Mary F x

  • thank you for your support

    muzza

  • It's a pleasure! Mary F x

  • Hi Muzza. You have much support here xxxx

  • Hi Muzza....lots of support here....

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