I'd like to write and say hi and share my story with you all.
I'm in Canberra, Australia and was diagnosed with BD last week after 15 years of progression of the disease. I was being treated for RA and had sought second opinions without much hope. Needless to say that I was actually relieved to hear the Immunologist confirm what I'd thought was the disease I'd had following years of research and a barrage of tests.
I have central nervous system involvement, severe migraine-like headaches and brain lesions along with the ulcers in the mouth and genitals and skin lesions. Fortunately for me, I don't have eye involvement except for dry eyes. I wasn't on any medications for about two years as I have a liver with elevated enzymes which reacts with the drugs. The progression of my disease worsened and I'm still hoping that a treatment plan will now be put in place to manage the ongoing flares and understand that any improvements may take considerable time.
Waking up each morning feeling like I've ran a marathon before heading off to my hectic full time job is a challenge as I'm trying to maintain a normal life as long as possible even though I spend most of the weekend recuperating from the week before. The extreme fatigue seems to be the most frustrating factor for me as medication doesn't help with it.
I'm 53 and I have three wonderful grandchildren and a very supportive, caring husband along with a caring family and medical team. These factors give me the courage to live my live as best I can acknowledging that I can't do the things I used to.
I'm off to the Rheumo next week to work through a treatment plan (on Imuran 50mg twice daily pre diagnosis, arcoxia, gabentin and others) and ask for another series of scans as something is not right in my lungs and ribs with pain and tenderness so hopefully they'll pick something up in the tests. The frustrating thing is that my blood tests only show minimal readings and the specialists have to rely on my logging of clinical symptoms to give to them each visit.
I'm aware that BD is very rare in Australia and am keen to keep in touch with everyone managing this terrible and painful disease which brings us all together in this forum.
Having a rare, complex autoimmune disease is a lot to get your head around.
Thanks for reading and I wish you as many pain free days as possible.