First Symptom

[maria garcia]

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?

[renidrag]

Everyones symptoms are different. Probably the most common would be joint pain and sinus problems. I had joint pain but also lung pain. Some folks suffer from what Docs initially think is a sinus infection for a long time. I suffered from joint pain and I mean really bad joint pain for probably a year at least. When my cough would not go away, after a few months I ended up at a pulmonologist office on a Saturday morning. He tried to make me have TB but when that was ruled out, two bronchoscopies and bingo. If you are having recurring symptons, please have them checked out. Wegs can be masked. What are your daughters symptoms? Meds would start immediately upon positive diagnosis.

[LilyPony]

My first symptom was my eye swollen shut but I think I am similar to a lot of people on here that an autoimmune disorder was pretty much the LAST thing that crossed anybody's mind. In my case, it was a good year of demanding a biopsy of the mass protruding from above my eye and dozens of doctors. Finally got a biopsy which came back as intense vasculitis, most likely wegs. And even then (and to this date) it is a constant struggle to get anyone to accept that it is anything other than stubbornly untreatable allergies - including the rheums! I am ANCA-negative though, which "proves" to the inexperienced docs that it's not wegs.

[Sangye]

Maria, there are a lot of autoimmune diseases and the initial symptoms can be just about anything. Even for Wegs the list is very long. I had only increasingly severe joint pain and weakness for about 8 months.

[ScreaminMeanie]

Initial disease onset I had only skin lesions. Most recent flare had skin lesions and joint pain. It's frustrating - it actually took me longer to be diagnosed with the 2nd flare than with the initial disease onset because the symptoms are so random!

[Chris G]

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.

[Jack]

Mine started with a headache due to sinus problems. It was not until I was suffering from multiple organ failure that I was diagnosed and treatment started the same day.

[elephant]

My first symtom at approxiamately age 12 was joint pain, red eyes, bronchitis on/off, weightloss, anemia and low backpain/kidney failure. In 2008 my symtoms were sinuses infections, eye pain, hearing loss, headaches, on/off fevers that would come on quick and then leave the same day and joint pain.

[Dianne]

My earliest symptoms were also sinusitis and sinus infections. The severe muscle and joint pain started this past December and was almost unbearable. My diagnosis came in March after suffering a posterior nose bleed on my way to work one morning. Between the time I pulled over and called 911 and them getting there, I had lost nearly half my blood and was in hypertensive crisis (my bp was 260/200). After nearly four days in the hospital, they still couldn't figure out what had caused everything to happen. It took going to an ENT for follow-up afterwards, for her to mention my 'saddle nose' and follow up with a biopsy. A week later I started treatment. I feel very fortunate that I had a doctor that was on top of things to get me diagosed in what is such a short time, compared to what a lot of others have to go through!

[pberggren1]

So Dianne, it was the ENT that thought it might be Wegs and none of the other docs in the hospital could figure it out?

[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!

[gwenllian111]

My first symptoms was a hacking dry cough, - and any type of stress or movement would set off these 'coughing spams.' I remember the nurses on the ward literally having to hold me down onto the bed, as I gasped for breath.

I'll always remember being in town with some friends, and suddenly, I couldn't stop coughing and I felt systemically unwell, as if I had flu. I thought to myself, I need to get home NOW.

[Meredith]

Mine started with a swollen gland on my face, right in front of my ear. Looked like I had mumps on one side. In fact my regular doctor checked me for it. The pain was awful. My regular doctor kept saying I would be better in a couple of weeks (that was after 4 visits in 2 weeks and one on Sunday. I made an appointment with a speacilist (ENT) and he put me in the hospital immediately. Tried every test he could think of, could not find anything. He finally said there was one more test - came back positive (ANCA). I believe he saved my life. Wonderful doctor.

[pberggren1]

I know many on here have not had good experiences with ENTs but there are good ENTs out there. I am fortunate to have one and I have seen some others that are good as well.

[delorisdoe]

I had a wonderfull ent whom I fear as much as some people fear their dentist.

[pberggren1]

Why do you fear him delorisdoe?

[Meredith]

My ENT kept having me come back to him (no charge) after I started seeing my speacialist after I was diagnosed - he was really concerned. Proabably saw him weekly when we were trying to figure out what I had (after my hospital stay) from the end of Sept. till December. Hard to believe it took that long. Could hardly walk part of the time because of the pain - in fact a company I worked for then during my review (they knew I was sick) said that I was moving to slow around the office. I was just fighting to stay out of a wheelchair. The more I think back on that the madder I get. Work for a wonderful company now but they are unaware that I have really anthing wrong. We are off Friday afternoons and I try to work all my testing/dr. appt.'s then.

[pberggren1]

Meredith: That is so nice that your ENT never charged you for all those visits. Do you still see him or need to seem him on occasion and does he still charge you?

I am glad you are able to work and for a better company with Friday afternoons off. What line of work are you in?

[Meredith]

Work for an International Steel company. I am an assistant to the VP. Love my job. I needed my airway stretched out approx. 4 years ago, went back to my ENT and he said he had not done enough of them. How honest can you be! Sent to another gentleman in the practice to handle my case, and yes he does charge me each time. I send people to him all the time though and I bet he checks up on me sometimes with the other doctor.

[pberggren1]

That is awesome Meredith. You do have a good ENT. Mine is honest that way as well. As soon as he is not sure about something he tells me and asks me if I want to see another guy that he thinks knows more. Good to hear about your job as well.

[delorisdoe]

Why do you fear him delorisdoe?

For the same reason people fear the dentist. It was not him he was kind and gentle but what he did to me was awfull. I have never thought of myself as a suck. I had 3 wisdom teeth pulled and went to work the next day...but the ent. I just dont know how any of you look at an ent without anything but panic.

leigh

[pberggren1]

I feel as if I need my ENT so I kinda like him. He even let me drive his brand new Jag XJL. Sweet ride.

[delorisdoe]

Did you swing by and grab the pharmasist on your way by.:cool1:

[pberggren1]

Did you swing by and grab the pharmasist on your way by.:cool1:

No, just a couple of residents and a nurse.

[maria garcia]

Chris yes I got the results lung is normal and they found a minimal thickening of the bilateral maxillary sinus everything else clear no air fluid or bone destruction. They told me via phone they didn't find what they were looking for(good news). But Im still concerned for her sinus. We have an appoint on Tuesday we will now more. I hope they will do a Biopsy.