Hi my husband has been ill for 13 years it started with his arms and legs twitching and his balance . Then he started to get depression

and panic attacks then he had falls and he was told he had epilepsy and tias and vascular dementia before all this he had trouble with his heart and a blood clot on his lung .Then he was told he had lupas and couldn't put him on any blood thining meds because of his falls then he started getting pains in his joints and trouble with his eye sight his elbows and ankles swell up and go red and hot . We went to see a Dr in October and he told us it was Hughes syndrome he has got us an appointment to St Thomas next month . Has any off you had the same and been told you have dementia thank you for any help you can give us x

11 Replies

  • Hi there, firstly well done, you are on the path for better care now, the fact that your GP has acted on this is great, his balance and falls will very likely lessen and improve on the correct medication, often people end up thinking they have dementia, which is actually not the case. Things will become a lot clearer after this appointment. Please write a list of questions and bullet points of symptoms, which will help at the appointment, and also events and incidents in the past! MaryF x

  • Thank you for your help just feel we are not alone any more I see you are thinking of starting a group in suffolk we live in suffolk and would be interested x

  • Good news, I will set a date soon. As your man has Lupus they may well decide on Plaquenil along side any anti coagulation. Let us know how it goes. MaryF x

  • Thank you will let you know how he gets on cant wait just want him to feel better again x

  • Hi Mabble

    I agree with Mary.

    Best wishes and good luck.

    Dave xx

  • Thanks you Dave feel like we are getting some were at last he has been threw hell with one thing and another just want him to have a normal life as possible

  • I'm sure you do, so good luck.

    Dave xx

  • Agree with all that has been said above. If you go to the Hughes Syndrome website by going to their logo and clicking on it and then clicking on the link, you will find all sorts of great info on the website which Im sure will ring some bells from the symptom point of view and make you feel reassured that you are now on the right path. Once the correct medications are being taken Im sure things will improve a lot and your GP will be instructed on how to manage local care so you can be reassured you have somewhere to go locally.

  • Thank you so glad we have joined every thing makes sense x

  • Thank goodness he has been referred to St. T's.

    I have 'small vessel disease' caused by Hughes this affects my memory and concentration. I have also got balance issues, which are better than before I had blood thinning meds.

    The jerky arms and legs you describe is also a facet of Hughes and quite often goes away once anticoagulated.

    Take heart your husband can improve with the right medication.

    Let us know how you get on xx

  • Thank you for your reply its so helpful to have others going threw the same thing we thought we were going mad .Only got sorted out because I looked on the internet and had to push if only I knew a few years ago we have been hell and back x

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