Hello. I have been a member here for a couple weeks now, reading your posts, and learning so much from your experiences (both challenges and triumphs) with WG. My father has been on the journey to getting diagnosed over the past two months. In such a short time it has been a roller-coaster for my family. This will be quite long, but I'd like to paint the entire picture (plus I'm a rambler!):

~ Dad was diagnosed with shingles in November just before Thanksgiving after noticing he was having the classic signs/symptoms of rash and pain on one side (left side of back and abdomen). Doctor prescribed a round of acyclovir and it cleared right up. No mor pain at all and only the remnant of his rash.

~ Around this time, maybe a few days before maybe a few days after his shingles diagnosis, he mentioned he was having tooth sensitivity in his back upper teeth and back lower teeth. He passed it off as somehow related to his shingles virus, because at his dental appointment in early Nov., his dentist described his gum and teeth as a mouth of a 40 year-old. A week or so went by and his gums around those back teeth became inflamed and he started describing that when he ran his tongue over those areas it felt like hamburger meat. My dad has always been meticulous about oral care almost to the point of obsessive, so he went back to his dentist to get it checked out. The dentist told Dad he literally had no earthly idea what was going on with his gums and teeth. He sent Dad straight over to a periodontist that same morning.

~ The periodontist (who has been in practice 30+ years) told Dad he had never seen anything like what was in his mouth before, made a call to an ENT, and sent him straight over to see the ENT that same day. Of course, Dad was getting scared and anxious at this point.

~ The ENT said his lesions did not look cancerous, but took several biopsies to confirm. He also swabbed for a nasal culture due to my dad's sinus inflammation, stuffiness, and sinus drainage that had recently begun. By this point he had also begun a dry cough, headaches, and tearing and redness of his left eye. The ENT said he really didn't know what could be causing his symptoms and told Dad to come back in 4 days for the biopsy results.

Dad went back on Christmas Eve and was told by the ENT that the biopsies were negative for cancer and the nasal culture showed no growth. He (the ENT) felt that his mouth sores and inflamed sinuses were being caused by a virus, so he put him on acyclovir and told him to come back in 10 days.

~ Over the next 5-6 days on acyclovir, my dad's mouth didn't get any better. I told him I thought he should feel at least SOME better at that point. He went back to the ENT the next day and the ENT said he honestly didn't know how to treat him, but referred Dad to a pathologist at the dental school nearby.

~ A couple days later my dad saw the pathologist who took more tissue samples and swabs (no blood was drawn). Four days later (a Friday) Dad went back to the pathologist for results and was told that after looking at slides under the microscope, he is certain my dad has Wegener's Granulomatosis. He told my dad that he should see his primary care doc ASAP and begin further testing as well as treatment. The pathologist then wrote a prescription for a 50mg taper of prednisone and handed Dad a poorly photocopied and very frightening article on Wegener's.

~ Monday morning Dad went to his PCP to let him know in person of his diagnosis. His doc immediately referred him to a rheumatologist who has experience treating Wegener's patients.

~ My sister and I went with Dad to see the rheumatologist the very next day (Jan. 21). I felt good about her. She spent almost 2 hours with us, thoroughly physically examining my dad and educating us. She said it is common to have sinus problems with WG, but not as common to have gum inflammation like Dad has been experiencing. She said she wasn't going to treat him according to the pathology results alone, so she walked us to the lab where they drew 10 vials of blood and took a sample of Dad's urine. He then had a chest x-ray, a chest CT and a CT of his sinuses.

~ We returned to the rheumatologist's office for my dad's follow up 10 days later (this past Friday Jan. 31). She informed us of the following regarding his tests:

Blood tests were all within normal range with the exception of two:
-PR3 ANCA positive
-TB Gold In-tube test "indeterminate"

Urinalysis normal

Chest X-ray clear

CT of sinuses showed inflammation and thickened lining (worse on left)

CT of chest with contrast showed one 1.5 cm density on the posterior apex of left lung. No adenopathy or pleural effusion.

At this point all I could focus on was the chest CT finding and I felt as if the floor was going to open up a swallow me. I don't exaggerate when I say right then I stopped being my dad's 35 year-old daughter and turned into a frightened, panicked little girl.

The rheumatologist began talking about referring Dad to a pulmonologist to investigate his lungs further before she felt comfortable starting his therapy. She spoke of "limited Wegener's" and questionable microscopic polyangitis and how the indeterminate TB test result made her suspicious as well. To appease me I think (I told her how miserable he feels with his sinusitis, headaches, and cough and Dad agreed), she prescribed him an antibiotic and prednisone 20 mg daily. Of course after 5 days on such a small dose of pred, he feels no better. His appointment with the pulmonologist is tomorrow (Feb. 5) and his rheum. called him today and notified him that she has scheduled a follow up with his ENT on Thursday.

Dad, Mom, my sister, and I are all so anxious and fearful, especially about the frightening chest CT. What a punch to the gut. :-( Dad has always been active and healthy and still appears so at 64 years old...he just doesn't feel that way.

I apologize for such a long post. I feel so scared for my Dad. What makes this hardest is seeing him worried...and afraid...even though he's doing his best to be positive. I appreciate anyone who reads this and can offer me some words of wisdom and encouragement.