Hello everyone.
I am in the CNY area and have recently been diagnosed with Wegener's GPA. The dx is not complete because they cannot get to the tumor in my lung to get a biopsy of it. It is in a terrible location according to both the thoracic surgeon and the radiologist who have reviewed the ct and pet scans. Cancer hasn't been ruled out either.
The rheumatologist I am seeing wants to start me on methyltrexate and prednisone anyway as he is convinced the weg dx is correct. I am frightened, to say the least.
My dx story:
June 2nd; my feet swell throughout the day and into the evening...goes away overnight. I was tired and short of breath when hiking with hubby over the weekend but think nothing of it. just getting old and already out of shape.
June 9th, went to urgent care with horrible lower abdominal pain. Abdominal CT and Ultrasound show nothing except an enlarged uterus and an ovarian cyst. I am referred to ob/gyn
July 2nd; finally see ob/gyn. still having abdominal pain and decreased appetite. I can eat only a bite or two at a time. I have now lost 15lbs since June 1st. He takes uterine biopsy and does some blood work for hormones and such. I have fibroids-have had them forever so no surprise-and my uterus is enlarged because of them but he does not think this is the cause of my problem. My primary care doc has been trying to talk me into a hysterectomy for nearly two years due to heavy bleeding and anemia(more severe right now) so I am referred for second opinion. He finds a strange area of skin on my left breast. I am referred for mammogram.
July 11th; mammo and ultrasound of left breast...all clear for cancer. referred to dermatologist.
July 14th; new ob/gyn says of course your pain/weight loss is from uterus. Schedules hysterectomy. I have now lost 20 lbs.
July 30th; dermatologist has no idea. gives me 3 different topical treatments.
Aug 19th: endoscopy for gi issues-shows nothing but inflammation. I have now lost 25 lbs. weight loss is slowing because I have figured out how/what to eat throughout the day. I still have no appetite and I can go 24 hours without eating and my stomach doesn't give a gurgle.
Aug 22nd; no change in skin lesion so dermatologist takes a biopsy.
Aug 29th; Dermatologist informs me the lesion on my breast is Morphea and I am sent for another battery of tests, including chest x-ray all of which I do on Sept 1st. By now I have lost 30 lbs and I have developed a cough to go with my ongoing headache. I have no energy to exercise and get short of breath walking from my desk to the bathroom. I have eaten more ice cream than ever this summer...and still I am down two pant sizes.
Sep 4th; my primary care doc's office calls and tells me to go for a CT scan the following day and schedules fu appointment with pcm for Sept 8.
Sept 8th; pcm tells me I have a 3.9x3.3x3 cm mass in my lung. that plus the scleroderma prompts a referral to rheumatologist. I am also scheduled for a pet scan, cardiology work up and pulmonary function test.
Sept 11th; see rheumy for first time. Determines this is not systemic scleroderma but localized morphea. Asks about my cough and do I have issues with my ears and sinuses-yes, for quite a long time. why? orders 8 more vials worth of blood tests
Sept 12th; heart checks out fine
Sept 15th; pet scan performed
Sept 18th; back to pcm for results of pet. not good. shows activity. I am having all over body aches, swollen and sore glands and sinus headache that won't quit. Still coughing. She gives me something for cough and anxiety. Rheumy calls me at 6:30 pm to say he suspects Wegener's disease based on symptoms and test results. Asks when the biopsy of mass is scheduled and when I tell him it isn't scheduled yet and won't be done until mid-October at the earliest, he throws a fit and sits in it, tells me he is going to call my pcm and see what can do to hurry it up....but don't worry...oh and go to emergency room if you start coughing up blood. Perfect day to start on anti-anxiety meds!
Sept 22nd; pft results ok
Oct 1st; consult with thoracic surgeon-no way to biopsy without taking half your lung. too close to too many blood vessels. repeat scan nov 4th. see me again Nov 13th. I call the rheumy and he gets upset-and reminds me to go to emergency room if I start coughing up blood. (duh!)
So, still no biopsy and he wants to start meds anyway. My appetite is returning, no weight loss or gain but my stomach makes noises again . All other symptoms persist. I am exhausted. I am confused. I am frightened. I started off the summer with stomach pains, scheduled a hysterectomy which got cancelled because now I have Morphea, a mass in my lung we can't identify and a rare AI disease.
To summarize....wtf.
Thank you for giving me someplace to vent and feel less alone.
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