First Symptom

[Dianne]

Phil, it was my ENT that figured it out...I also had just had an initial visit with a Rheumatoglist and a ton of blood work done, but hadn't gotten any results yet. When the biopsy came back, my ENT called my Rheumatologist, they put me on Prednisone right away and three days later, I was started on treatment.

[ArlaMo]

I started out with all the sinus issues - tried antibiotics, allergy meds, etc. Progressed to severe ear problems, Bells Palsy, then joint pain. Finally, I had hemorrhages under my fingernails and that was what finally got us on the right track with a WG diagnosis.

[vdub]

6 doctors total. 2 back home and 4 on the road. The ones on the road kept saying sinus infection and give me a handful of antibiotics. One actually gave me a CT Scan because I was having bad headaches. She said I had a polyp and should go home. So I went home and they found the tumor with an mri. So it was sinues and headaches, plus this big ugly thing in my head that wasn't supposed to be there. My pcp put it all togeather....

[maria garcia]

Im completly consumed with this! Yes my daughter has allergies but we all do at home!Dry coughbut I had taken her to the pulmonogist 1 year ago and they said she was fine just stress related. bleeding nose when sinus infection only twice,and her red eye which was the reason why we ended up doing the rhematology profile, I just didn't expect this to come on positive. She looks so healthy! Im so confused! I guess after her chest xray and sinus next week I will find out more. Thank you everyone! What is the defference between
wegners and Vasculitis?

[maria garcia]

Do they put you on meds right away? If you have Positive Anca but no diagnosis like my daughter says. WE are waiting for test.

[maria garcia]

My earliest symptoms would have been years of sinusitis and sinus infections. But the symptoms that lead to ANCA testing, and eventual diagnosis, would by all of my eye symptoms, eyelid swelling, episcleritis, scleritis, keratitis.

Chris that means you have lived with Wegners for a longer time with just sinus infections and eye swelling. Did they put you right away on meds? Have you had any other symptons. Your symptoms are just like my daughter.

[JanW]

My first symptoms would have been shortness of breath, which led to a misdiagnosis of asthma and eventually the diagnosis of WG when I had increasing joint pain.

[NicShaf]

What was your first symptom that your doctor made you check to see if you have an Auto Immune disorder? I feel alot of my daughters symptoms are so close to allergies and we all have them here. When to know? Also if you have this desease when are you put on med?

My first symptoms were like a common cold; runny nose, fever, fatigue...but they didn't go away for months. My symptoms started in Sept2010. I was hospitalized for a couple days in December after I saw my PCP for a follow up on pneumonia, and they saw cavitary lesions in my lung x-ray. They weren't sure if it was a fungus or cancer, but they were keeping me until they could figure it out. Wegs was on the list of about 5 things that could cause lesions like that.
I had a lung and sinus biopsy done, but both came back inconclusive. My Pulmonary doc and Rheumy both explained that with Wegs, you can't look at one thing, you have to look at the big picture of symptoms to get a diagnosis.
They wanted me on meds the first day out of the hospital. I was told I could hold off for about a week so that I could meet with a fertility specialist and make some decision on treatment from there. I started Prednisone a couple days out of the hospital, and Cytoxan about 1.5 weeks after being released from the hospital.

[Chris G]

Im completly consumed with this! Yes my daughter has allergies but we all do at home!Dry coughbut I had taken her to the pulmonogist 1 year ago and they said she was fine just stress related. bleeding nose when sinus infection only twice,and her red eye which was the reason why we ended up doing the rhematology profile, I just didn't expect this to come on positive. She looks so healthy! Im so confused! I guess after her chest xray and sinus next week I will find out more. Thank you everyone! What is the defference between
wegners and Vasculitis?

Vasculitis means: Inflamtion of blood vessels. There are many diseases which cause inflammation of blood vessels - they call this group of diseases, Vasculitis Diseases - they all affect blood vessels of different sizes, and in different locations in the body. Wegener's IS one of those vasculitis diseases. WG affects smaller blood vessels. Here's a link that will help you sort it all out. http://www.hopkinsvasculitis.org/

They will likely not put your daugher on meds until they have a diagnosis. They might try prednisone to see if that causes improvement, but they will not (should not) put her on any immune supressing drugs without being sure.

Yes, i think many of us speculate that we've had wg simmering in my bodies for many years. No way to know for sure though.

(all of my other symptoms were sent to you via private message)

[Chris G]

Im completly consumed with this! Yes my daughter has allergies but we all do at home!Dry coughbut I had taken her to the pulmonogist 1 year ago and they said she was fine just stress related. bleeding nose when sinus infection only twice,and her red eye which was the reason why we ended up doing the rhematology profile, I just didn't expect this to come on positive. She looks so healthy! Im so confused! I guess after her chest xray and sinus next week I will find out more. Thank you everyone! What is the defference between
wegners and Vasculitis?

Did your daughter have a sinus x-ray or a CT? The results of x-rays (and even CT's) don't take weeks to come back. Is there another reason why you don't see the doc again until next week? He shouldn't have told you "it might be Wegener's", and then said, see ya in a couple weeks!!
I'm not crazy about this doc!