Hi everyone. Glad to be on a site with real people having similar experiences than to just hear from doctors.
I am newly diagnosed. I went into the hospital right before Thanksgiving. I was having some chest pain. I thought its anxiety or it's heart related so i better check it out.They ran tests. An X-ray of my lung indicated something was wrong. CT of my lung and I'm being admitted for TB. I have cavitary lesions on my lung.
I tell the docs there is no way I have TB. I get tested for TB every year for work and just had a negative TB test a few weeks ago. I work with homeless families and I'm at risk. Most of the docs are sure it's TB. I immediately assume its some type of cancer and I'm going to die. I'm quarantined and spend the next 5 days being poked and prodded. Tested for every disease, bacteria, fungus. The doctors are puzzled. I have these cavities in my lung and I'm not sick at all. No coughing. Besides feeling fatigued often I'm otherwise fine. I have a few night sweats. My nose is stuffy but I assume it's the dry heat in my house so I don't think to mention it.
During rounds I meet my pulmonologist. Dr. Bertozzi. He thinks I might have this rare disease called "Wegeners Granulomatosis." This is a pretty scary disease and can be fatal. They do a needle biopsy. The only information they get, it looks infectious. My ANCA tet is negative. My blood work is normal. I leave the hospital after 5 days not knowing what is causing these holes in my lung. Follow up with Dr. Bertozzi. (I couldn't ask for a better doctor. He spent so much time thinking about my case and consulting with other docs.) He's thinking I might have ths disease called Echinocaucos. Its a parasite I could have picked up traveling to Morocco. Schedule a bronchoscope to confirm. Thats negative. A few more weeks pass and nothing. I'm still feeling fatigued but healthy. My nose is still stuffed. It starts bleeding all the time and it's so blocked I can't breathe through it at all. Then one day I'm walking by a mirror and I look at my nose. It doesn't look right. The bone is standing out. I tell Dr.B. he says it an be a sign of Wegners but it's not especially spongy and he takes a quick peek nothing out of the ordinary up there. The cavities in my lung are growing larger. Its time for a "real" biopsy. They need a good chunk so they have enough to test. About 2 months after my ER visit I get a diagnosis. It's Wegeners. It's limited since my kidneys are not involved. Thank God.
So here I am. Sorry for the novel it just sort of came out. I'm on prednisone, methotrexate and Bactrim. I saw an ENT doc who did a CT of my face and confirmed the diagnosis. There's crusting and erosion in my nose and my sinus passages are very thin. He gives me a nasal rinse. Finally I get some relief. I missed breathing through my nose. I've been on the meds for 2 weeks now. I haven't felt any side effects so far. I'm crossing my fiAngers. I did experience some nausea and dizziness yesterday. Not sure if it's related. Besides feeling tired all the time im ot feeling sick. I do notice aches and pains. I was trying to help my son with a project and had to use my hands to twist wire. My hands hurt so bad I couldn't finish. My legs feel like lead at the end of most days and I just feel exhausted.
I'm thankful that I'm not feeling sick but am usure what to expect. Does anyone else ave a similar version go wegeners?
Bookmarks