Intro

[Victoriaitsnosecret]

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?

[Dirty Don]

Welcome Victoria...you,ve come to the right place! Good people, lots of knowledge and experience here. Please ask lots of questions as you progress thru your stages of WG, especially of your docs! My case is similar to yours in some ways as I have a 'lite' version...no kidney involvement, temporary lung problems and ravaged sinuses! Am on pred and mix also. I was diagnosed a year and a half ago, so have stories for you! Best of luck and ask away!

[drz]

Welcome! Glad to hear you generally feel OK. Hope it lasts. Usually things improve after diagnosis and correct treatment begins. It is pretty typical for many, maybe most of us, to have encountered difficulty in getting a correct diagnosis initially. I remember also thinking I had TB or some terminal cancer upon my first admission. Or maybe some other weird medical problem from South Africa or a bug bite I had the summer before when my symptoms began to get more pronounced. Glad you got it finally diagnosed so they can sort out the treatment and start fixing things up for you.

[mishb]

Welcome Victoria
I guess the secret is out - you are one of us (sorry, bad I know)

You treatments sounds very familiar - TB, Hep C or HIV was one of the first things they tested in me - before the sinus biopsy.
It was about 15 months from the time my sinuses started until diagnosis back in 2010. The joint pains started about a year before the sinus infections.

Oh, it's a terrific disease, apart from the pains and fatigue, I have never had a feeling of sickness with it either, but don't let that fool you......it's a tricky little bugger and something can just sneak up on you with warning.

There are so many awesome people on here that are willing to answer your questions, keep you from losing your mind and having a few laughs with you along the way.

Take care and remember to..............

[pberggren1]

Victoria:

Where do you go to see Dr. B? I'm just concerned you are not getting the proper care. One thing that jumped out at me is that you are on methotrextate (mtx) and not Cyclophosphamide or Rituximab. Those are the big guns and usually are used when the lungs are involved like you have.

A good nasal rinse to get is the Neil Med one at most pharmacies. Ask you pharmacist this week to show you them. They are not too expensive. But do not use tap water. Use distilled or RO water and warm it up slightly. You don't want to use cold water and water that is too hot can harm the nose as well. I personally use a Waterpik for rinsing the nose. I have found that to be the best.

[Psyborg]

Welcome Victoria, glad you made your way here. As Phil said it is curious to go straight to MTX...CTX or RTX is pretty standard for the first wave.

[renidrag]

Welcome Victoria, this is the place to be for information and assistance. Shortly someone will be on to ask you if you have a rheumatologist versed in WG and vasculitis. I am just South of Boston and go to Boston Medical Center under the care of a PCP and Dr. Paul Monach, a Rheumatologist. And I also have a lung doctor there. I only have lung involvement and am presently in remission. Your intro is quite similar to a lot of folks here, I too was told it was TB until two bronchoscopes brought a diagnosis. Look forward to hearing from you and hope you start feeling better soon.
Dale

[chrisTIn@]

Welcome to the forum!
Rinsing your nose sure will help you to get rid of the 'stuffed feeling', but most important is the right medical treatment.
I agree with Phil Berggren at that point.

It will take a while, but with proper treatment the feeling of tiredness - fatigue will also diminish.
At least, that is my experience. (I also have 'limited' Wegeners/GPA).
Good luck to you!

[Dirty Don]

Welcome Victoria
I guess the secret is out - you are one of us (sorry, bad I know).

THAT is sooooo bad Michelle...Victoria...secret...I get it...sorry Victoria, I, along with some others, have a very weird sense of humor on here...call it Weggie humor I guess!!! But, we continue to laugh both at ourselves and life in general...such a deal we got in WG (oh sorry, got nailed the other day again...it's GPA!!!!!).

[HopeinTN]

I'm sorry you had to go thru all of that, and it sounds familiar to my story. I had to have an open lung biospy too and it was no walk in the park. It actually turned into a lobectomy. But that did the trick, and got me the diagnosis as well. So far, it's in both lungs but everything else is clear! I've been on Cytoxan, prednisone and bactrim since Oct 2011 and hope to step down to something else by June 2013.

I'm so glad you found this site. It's a life saver and nerve calmer at the same time. Good luck!