View Full Version : my diagnosis

06-22-2009, 04:53 PM
hi everyone, hope all are enjoying Monday.

I have read so many heartbreaking stories about our members struggling through the diagnosis process. I had a brainstorm (which could be a scary thing), and decided to start this thread. I would be interested in hearing stories from members about the exact point at which they were diagnosed, and what was the immediate event that lead to that diagnosis. My goal is that this helps those without diagnosis to recall similar events in their lives, and thus help with the diagnosis process.

so, i will begin, and i hope these stories help someone.

In 1996, my body fell apart, everything. I was diagnosed with fibromyalgia and cruised along with it until 2008. I started feeling worse, and things were just different. I was on a quick downward spiral and did not know what was going on. I just felt terrible, no energy, breathing issues, pain in new places, and a rash accross my nose. I had made trips to the ER with left flank pain so severe that i called an ambulance, and later with such severe back pain that i got a friend to drive me to er. All tests came back normal. At my next regular appt. with my rheumy, I asked her if fms was progressive, if it got worse, and she said no. She said to me..."you know that for years we have thought something else was going on, now i am afraid that i can't delay the lupus diagnosis." My labs had always been positive, so we really focused on an indepth conversation about symptoms....we went back in time and identified many lupus symptoms, so she diagnosed it and we started Plaquenil. It all seems to have happened really quickly, but at the time it seemed to take forever. I did not get much relief from Plaquenil, so now i am on methotrexate...it is giving me several good days a week.

learning from each other is yet another gift. Thanks to each of you.

06-22-2009, 07:03 PM
Good idea Phyllis !! Its interesting to see what sort of things led to a diagnosis..

For me it was only this year i was diagnosed.

In Dec 08, i had a little joint pain in my hands, the doc put me on ibuprofen and it went away. Nothing til March 09, when the pain returned to my hands. I also started getting massive bruises on my thighs and upper arms. I went to the doctors and got blood tests. That night they called me and i had to go straight to emergency since my platelet count was 0. I was in there for 5 days. When i came out, i was put under the care of a hematologist. He then sent me to see a rheumatologist because of some of the results that had come back from my GP and the hospital. I saw the rheumatologist a month ago, and he diagnosed me in the first 5 minutes of the appt. I started on plaquenil. Last week i got the results of further tests back, which confirmed the lupus diagnosis.

I think i was lucky i was diagnosed so quickly...it was all really scary and overwhelming, but i am glad i didnt suffer for years like some people without knowing what was going on.

06-22-2009, 07:41 PM
In June of 07, one month before my weeding, I got really bad bruising on my torso and smaller bruises on my legs. I went to a walk in clinic who told me my platelet count was 2000 and to go directly to the nearest hospital. I spent 4 days in the hospital on high dose Decadron and was refered to a hemotologist. Hemo said she thought something more may be going on but diagnosed ITP only. After a year of prednisone treatment and a miscarriage I decided to have my spleen removed. Shortly after being weined of prednisone symptoms started to arise Joint pain, Swollen lymph nodes, Extreme fatigue. Referred to Rheumo in Oct of 08. 1st rheumy said he thought I had Lupus but could not diagnose based on not enough characteristics wanted me to start plaquenil anyway. I got a 2nd opinion who did not want to treat yet. In Jan of 09 urine test revealed protein, 4 characteristic kidney damage. Lupus diagnosed :hissyfit: