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[MaryF]

youtube.com/watch?v=KiGd277...(Not working as expected?)

MaryFx

[luluspetals11]

Hi everyone... About 6 months I got diagnosed with lupus anti coagulant and anticardolipin. Since then, I have had a total hip replacement due to a vascular necrosis , and I will have to have the other hip done soon. I have been seeing a hematologic and rheumatologist, but they are sort of puzzled about what is going on with me. So , I have been doing my own research, and here is where I ended up. Confused about if I actually have Hughes Syndrome. ...but figured I would give this a try. If anyone can help me out ...that would be wonderful. I have not been feeling well...mostly tired all the time...and I am just sad , frustrated and feeling very alone with all of this. Hope to hear from you. Thank you.

[MaryF Administrator in reply to luluspetals11]

Hi there have you had a look through all the information on the actual charity website? If not I can send it. MaryF

[luluspetals11 in reply to MaryF]

Hi Mary F...that would be great if you could send me that information. Thanks!

[MaryF Administrator in reply to luluspetals11]

Hi there, read through this website, it is full of information, symptoms, leaflets to read and also specialists and some patient histories told in the media. hughes-syndrome.org/ MaryF

[luluspetals11 in reply to MaryF]

Thanks so much!

[Jackamo]

Hi there please do not feel alone as this site is excellent an there is do much support I here . I to was diagnosed with lupus anticoagulant about 18 months ago and am having a lot of problems with my hip but then 2 months ago they also diagnosed Hughes so please when u go bk to c ur consultant question them about Hughes I hope u find the answers ur looking for all the best x

[luluspetals11 in reply to Jackamo]

Hi...so how do they test for Hughes? Sorry you are having trouble with your hip. If possible, ask about having images done. Hope you feel better.

[Suzypawz]

Wow 2000!!!!!!

Hi luluspetals11 I do hope you find the answers you are looking for, it can be very frustrating when you are in limbo....not knowing.....

Maybe you need to get to see your doc again or get 2nd opinions to see if it gets you any further & get them to explain your diagnosis better to you, this can be a huge problem at times, I've seen it often where we've heard wrong or didn't clock everything that was said to us.

I hope you are ok & this helps at all x

[luluspetals11]

Thank you everyone for your replies. I called my doctor this morning, just waiting for a call back.......going to ask more questions. Hopefully get some answers.