I'm hellojulie and this is My Story

[hellojulie]

I'm 73, married 46 years, 11 grandchildren. I was active, and in good health, up until May of 2017. I felt (I remember this distinctly) a sudden plugging of both ears, as I was driving. I thought "Oh, great, right before a trip."

Two days later we were on a plane on the way from Baton Rouge to Seattle, heading ultimately for BC Canada to see my brother.

By the time we got back a week later I had sinus and ear problems which lasted all summer. August 17, sudden paralysis of the feet and right hand put me in the emergency room (where an x-ray showed nodules on my lungs) and then the hospital, Our Lady of the Lake, in Baton Rouge.

A young doctor, just as I was going in for an MRI, said, "I think you have Wegener's." First time I'd ever heard the word.

A week of tests later, including biopsies of the lungs and kidneys which were diagnosed at the Mayo Clinic, and I was started on four plasma exchanges and put on Rituxan once a week (for four weeks) at the nearby cancer center. Of course I was also given massive prednisone doses, and oxycodone for pain in the legs and hand, as well as for generalized pain.

I am now in remission but have permanent "drop-foot" and neuropathy, have gone from a walker to a cane, can no longer drive of course, and have a great excuse to not go places! Husband taking good care of me, especially making sure I get my meds on time. Rheumy doc has me on Cellcept, 10 mgs of pred, blood pressure meds, and gabapentin. I see the kidney doc, the pulmonolgist, my GP, and Pain Management docs on a regular (six weeks to two months) basis. I am often very tired, and do not go out except to appointments, but, hey, lots more reading-time! Church, sometimes.

As I read of others' stories, especially your young ages (God bless you all) and often late diagnoses, I am astonished at the speed and effectiveness of my own diagnosis and treatments.

I think if I had not had the paralysis, leading to hospitalization (and the lung x-ray) my kidneys would have failed, and I'd have a different story -- if I was still alive.

THANKS for all your stories -- I am learning a lot and will give this site to ALL my doctors!! Thank you, Andrew-from-Canberra!!