View Full Version : HI!

03-16-2014, 08:43 PM

I'm not so great at expressing how i'm affected by this disease, but i am in need of support and thought this might be a good way to find some. I'm 30yrs old and have spent my entire life watching my mother battle Lupus. She was diagnosed at 17 (seizures, lung trouble, heart, the works). She went into a 5 year remission when she had me and it was a bit more mild when it returned. My mom is seronegative. Even her compliment levels and kidney functions are always normal. I have never been the picture of health but over the past ten years have been battling strange symptoms that no one could quite put there finger on but nothing that took me out of commission. Now, for the past 7 months things have been raging out of control. I have been suffering hair loss, severe gastrointestinal symptoms (nausea, pain, irregular bowls, severe reflux), headaches, aching knees, fatigue, fevers, petechiae, numbness in the face left arm and leg, difficulty breathing/swallowing and chest pain. Every test has come back completely normal. The rheumy is sure that this is autoimmune. My mom, who has been living with this all her life, thinks this is autoimmune, but i'm having a really hard time accepting that without any kind of solid evidence. I'm currently on plaquenil, have been for the past 2 months. Many of my symptoms have resolved; however, the most severe symptoms are sticking around and it's really affecting my quality of life. I'm starting to become fearful that this is the new normal for me. Any advice or insight would most appreciated! I'm just not sure where to go from here.

Thanks in advance!

03-16-2014, 08:51 PM
hi kaciekat.

i do understand the confusion, and the fear.
this disease has no respect.
may i offer you cyber hugs.

please take the time to read a few of our older posts ......
they are our personal history with lupus.

also use the search function.....
it is very effective.

i hope you can find some answers, and treatment.

03-18-2014, 06:04 AM
Just remember always have hope. .. I know it's hard not knowing, but eventually they will figure it out... my tests were negative for a few years. .. then magic a test came back positive. .. here's a quote that helps me... "the key to every door lies within you" it helps me remember that even if I'm super flaring I can make the best of it... I hope this helps. .. :-D

03-18-2014, 04:23 PM
Hi KacieKat,
I am new here too, 34 years old. I can identify with how you feel. It seems that autoimmune conditions are very nebulous and it can be easy to feel like maybe you are just going a bit crazy. I was on plaquenil for about five months. I noticed no improvement for the first three to four months, then I was still improving at five and the worst of my joint pain was the last thing to start to improve. My rheumatologist has just switched me to methotrexate though as my hair was falling out from the meds and I needed a higher dose than was safe long term to be effective, but if it has worked a bit for you after only two months it should just keep getting better. I am just psyching myself up to start the methotrexate this weekend.
My rheumatologist tells me that its only once I have felt better that I will realise how much everything at the moment is not normal.
I am clinging to that.
Hope it all continues to improve for you and just wanted to say, give it time. I was ready to quit the plaquenil, but it really helped in the end.

03-18-2014, 06:25 PM
Just because your tests have come back negative doesn't mean you don't have lupus. My tests came back negative, but my Dr. believed I had it, and treated me as such. He went by my medical history. Also, my father had it. He was formally diagnosed.