I was diagnosed with Lupus SLE and Anti Phospholipid syndrome in May 2004 after several missed oportunites, I was in hospital for 3 months i had a wonderful Consultant at the time who was their for me EVERY day of those 3 months. I have suffered multiple DVTs in my legs and PE in lungs i also very nearly lost my right leg due to complications but fortunatly the blood supply came back.
Since my diagnosis and my Consultant leaving the hospital i was under, i feel that my GP and new consultant doesnt take anything i say on board i was very over whelmed by what happened to me back then so i never knew what to say to the consultant as i just get on with life as best i can and deal with my flare ups but i have always suffered from joint pain in my knees to the degree i can not sit in a chair as they get very sore and stiff. I mentioned this at last consultant appointment but they didnt seem that interested and i said about having Lupus could it be related, he just said to see my GP about it ie; pain relief. I have recently moved and have no relationship with my new GP and just feel like getting on with it like i have for past few years. I also no longer have regular check up with my consultant only if i was to have a baby why do other sufferers see rheumatologists ?? Does anyone else feel like your just left to it after being given a diagnosis ???
Thanks for listening guys stay well xx