My biological father has wegeners granulamatosis. He was diagnosed at 40.
I will be 35 in July.

Back in september I was having trouble with my eyes. It might sound silly, but I just felt like I couldn't see. I got new glasses and the only trouble they could find other than that I needed a new perscription was high pressure in my eyes. They tried to treat it as glaucoma but the eye drops they gave my caused my eyes to turn vampire red and they made my eyes hurt. So they did some weird field of vision test and decided that it didn't seem like glaucoma. Finally my eye dr referred me to a real dr. (Honestly at the time I thought I had a brain tumor because I also had a lot of unexplained nosebleeds!)

The real doctor suspected that it wasn't my eyes at all but a sinus problem (which at the time I thought was crazy because I hadn't had a cold). He wanted to do a head ct scan but at the time my husband had just started a new job and we were waiting on his insurance. While I waited for the insurance numbers my eye problem seemed to improve so I never scheduled the ct.

In january I downloaded a fitness app on my phone. I started counting calories. I also weighed myself regularly. And in one week with no explanation and the only thing I was doing different being keeping track I lost eleven pounds!

After that in February my period was 17 days late. Pregnancy is not possible for me (I do have 3 school aged children) because I lost a tube to an ectopic pregnancy 7 years ago and I lost the other side ovary to a ruptured ovarian cyst in 2013 (and in 2008 I had the tube that was remaining tied). I wondered if it was because of the unexplained weight loss.
I mention the late period because it seems like whenever I get my period my immune system dies. I seem to always catch a cold. So when I finally did get it this time I once again caught a minor sniffly type cold.

That at small cold progressed into a chest cold and a cough that got worse and worse until 4 weeks later I finally went to the dr. He diagnosed me with bronchitis with bronchiolitis and put me on a strong antibiotic.
Before the 10 day course of the antibiotic was up my chest hurt worse, my cough had not improved, and I was wheezier. So back to the doc. He extended my course of antibiotic for 10 more days, added 3 days of prednisone, and albuteral nebulizer treatments as neccesary.

I I improved on prednisone. But after my dose was over my cold was just as bad.

A week eek later out of the blue I developed a stiff swollen neck/lymph nodes and a swollen painful throat. By the next day it was the worst head cold of my life and by the next day I couldn't get out of bed. My nose was just thick yellow snot.
I went to the dr. Upon looking at my throat he said I either had severe mono or severe strep. He ran tests for both and both were negative. He said it was just a virus and that if I wasn't better by Wednesday to call back. I stayed in bed for three days.
Thursday I called and said I wasn't better. He called in a perscription for a weak antibiotic and a stronger 3 day course of prednisone.
I started it immediately. It was so crazy but within hours of taking the prednisone it was like my body just relaxed and sighed with relief! I improved only to the point of functioning.
Two days after I stopped taking the prednisone I was just as sick as I had been to start with!

At this point I mentioned that bio dad has wegeners. So I went back to doc. He ran some blood work (NO ANCA TEST). He said that everything looked normal and "there are no signs of inflammation so there is no way you have wegeners". He called it a very bad virus and said that my body just couldn't handle it. He decided to do a 15 day tapering down dose of prednisone.
I felt functional on day 1 through 3 but just not better like I felt I should. (Keep in mind that from that first bit of time in feb, I had been sick for 11 weeks already).

So so I called back my doc. He said he had done all that he could for me and said I should see a different doc. She scheduled me for the next day.
The very first thing she said to me was that she has a wegeners patient and that I could absolutely have that. She could not believe how awful my nose looked! My bp (which had slowly been rising through this whole sickness) was a ridiculous 141/101!
she reviewed the labs the previous doc had ran and said that they were not normal, that my sed rate was very high.
She said she wanted me to see the soonest available rhematologist (which is now my appointment in July). And she said she wanted a ct scan of my head and neck. They got me in for that immediately.
My ct scan showed that every sinus cavity in my head that could be infected was deeply infected and one showed nodules. My tonsils were swollen and my lymph nodes were swollen. They had me come back and get an antibiotic shot and she put me on another antibiotic.

So so now I have 2 days left of prednisone, a half tablet each day. I am afraid that once I am done with that my cold will come back full force (as I have improved but still cough and still stuffy nose.

The thought of facing wegeners as a diagnosis is a scary prospect.

On on a side note I have also been flipping exhausted since this whole thing started. My ears have also been plugged. And I have also previously dealt with tounge ulcers.

Thoughts?