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Hello from Northern California!
Hello everyone! I'm in!
My name is Nicole, I go mostly by Nikki. I am 33 years old, married and a mother to 3 fur-babies. I have just been given a "99.5% diagnosis" of Wegener's Granulomatosis. I'll explain why I have this oddness in a moment.
It all started for me back in February 2012. I got a "cold". At least, that is what I thought. It was the worst cold I've ever had. In fact, I thought it was my first ever sinus infection. I've been a healthy person, I get about a cold a year, I never get the flu unless I get the stupid flu shot. So, this knocked me on my tookus. My sinuses were in agony. So much pressure and then, my ears swelled up with fluid and I felt underwater. This lasted forever. One of my salivary glands swelled up too, alarming me. But, my ENT said it would go away on it's own and the fluid would eventually drain. He was the one who did a CT of my face and my sinuses were clear, but my nose was inflamed. Weird. My sinuses were the most painful.
Ha. I ended up back in his office in August begging for tubes in my ears because I couldn't hear and I work as a 911 dispatcher so my hearing is kind of important!!! He put a tube in the left in August and the right at the end of September, still telling me to ignore the salivary gland.
Finally, at the end of October I felt somewhat normal. Until I got the flu shot. November kind of sucked for that. In mid-December 2012 I started coughing like a harbor seal. One night at work I felt like I was having appendicitis as I was in a great deal of pain in my lower right abdomen. I went to the ER, got a CT scan and the doc said no appy but ... I had pneumonia in my right lung. Here's meds ... go home, rest, etc.
It wouldn't stop. I kept feeling worse and worse. I started coughing up blood spotted sputum. A few long bloody noses, etc. I had 6 chest x-rays, three contrast CT scans, and then a PET scan because my last CT showed inflamed lymph nodes. I also had two ANCA blood tests come back high. The PET scan lit up like a christmas tree ........... on my salivary gland and the spot in my lung that they kept looking at.
The pulmonologist I saw wanted me to start meds for Wegener's due to the ANCA test and the symptoms but the Rheumatologist wanted a tissue biopsy so they opted to take out the nasty salivary gland. Before surgery, my platelets decided to take a dive for no apparent reason. By the time surgery came round, they were bcak to normal. Gland came out, off to pathology .............
Docs called and told me it was a plasmacytoma! So Wegener's seemed off the table. I had a bone marrow biopsy to rule out multiple myeloma. Bone marrow is OK for the moment. I have some rare cells there too but in an OK amount. I'll have to be monitored by blood work forever and .... have to have radiation therapy on the area where the gland was removed to make sure all the cells are gone. But, then my oncologist (got one of those too) was saying that the plasmacytoma isn't what was making me ill.
I've been fatigued like mad, still coughing up speckled sputum, low grade fevers. I get dizzy ALL the time. I was working out 5x a week and now laundry makes me feel like I ran 40 miles. The muffled feeling in my ears is returning, my eyes are constantly burning now and I feel pressure in my nasal cavity again. It only feels like I'm getting worse, not better.
So ... I was off to have the spot in my lung biopsied. The local pathologist found granulomas in and shipped my sample off to Stanford Medical Center for confirmation. Unfortunately, they told my docs it would be at least a month before the results came back. My rheumatologist doesn't want to wait a month for them to get back to him and is going ahead with the medications.
Sort of.
I'm on 60mg of Prednisone a day at the moment. I will be on Cytoxan once the radiation is done as they cannot be done simultaneously and the radiation needs to be done. My doc is hoping I'll feel better by the end of the radiation and we won't have to go ahead with Cytoxan as I seem to be a healthier Weg's patient so far .... however, I'm feeling a wee bit worse every day.
Honestly, after telling this tale and reading some others I do feel quite blessed. I feel for so many of you and what you have had to go through before diagnosis. It seems we have caught this before it's really done any damage. I thank my general doctor for ordering the ANCA tests at the beginning of all this in January of this year. Otherwise they wouldn't have had a direction to head.
Whew, that was a long one.
Anyway, I am glad there is a forum like this out there. I've had so many questions in going through all of this. Wegener's was brought up way back in January and I've been reading the forum since then. It feels like I finally have some answers and will do whatever I can to keep this beast at bay once I can get it gone!!!!!
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