I am 22 I have been told I have SLE I have 2 kids I had severe eclampsia with my first (relegated to lupus) and eclampsia with my 2nd. I have some sort of antibody I can't remember the name of it that can cause heart defects in pregnancy. I have been at the rheumatology for about a year it came back all the signs in my blood indicating that I have lupus my mum also had it I have arthritis and Sjögren's syndrome my joint pain in constantly bad if I didn't have my… read more
I feel your frustration. I have been trying to get accurately diagnosed for YEARS. I am 47 and think I am finally getting close to getting real answers. My rheumatologist was very frank in telling me that auto immune diseases are very difficult to diagnose since there are so many overlapping symptoms. I get brain fog regularly, but it is worse when I am in a flare. I also suffer with the pain of fibromyalgia and am only taking OTC meds for that. I was on prednisone which helped with my shortness of breath, but they took me off. We will be discussing the drug Plaquenil at my next appointment in 2 weeks. I am not in a hurry to take that because of the side effects, but I am having such a hard time that I feel I may have no choice. The most important advice I can give you is to take it slow, find a doctor you not only trust, but LIKE. You have to be your own advocate and you cannot give them too much information. These diseases are so complex. Stay strong. xo
I can really feel your pain Deborah, and yes medication will help definitely!!! I can sure relate to the confusion, arthritis, and many on this site too!!! Lots of hot tubs helps I find - epson salts are great! Lots of links for info. on this site too! Hang in there!
Hi! Talk to you rheumotologist and let the doctor know how you struggle and feel. Medication can really help you and change the quality of your life for the best!
Who diagnosed you with sjgrogen's syndrome? How do they diagnose that? I think I have that. Hard to get any doctor to want to diagnose anything!
the confusion and and memory problems could be due to what is commonly called brain fog wich some lupus patients can get at times. ive had it a few times usually when im in a flare. for me I notice it comes and goes and never stays with me for long periods of times. a nuerologists can answer most of your concerns and questions on this.