Stress

[Barbara N]

I believe stress to be the biggest factor for me.

I had a serious car accident, and then the week my father died, a routine mammogram found lumps in both breasts that needed a biopsy. Three things all piled into one big stress load........is what I believe set it off for me (the night of my fathers funeral).

I also suffered from ear infections and tonsilitis most of my childhood, and then sinusitis in my early adulthood - but I did not have my tonsils or adenoids removed.

My ENT's theory is that it attacks the place that is the weakest or the place that the immune system has always worked hard to fight infections on - therefore as I/we have ear, throat and sinus infections in early years, this is where WG has taken hold - on the vulnerable area.
With this theory in mind, I wonder if the lungs are attacked with people who always suffered chest infections or bad colds when younger, and with kidney's, did it attack people who suffered from UTI's in earlier years.

I had my tonsils until a few years before being diagnosed. I had WG for many years before being diagnosed. I had two operations a few years earlier to reconstruct a shattered nose and jaw and the doctor,,now deceased, used me as a guinea pig and put home made un -approved soft palates. I was 6 weeks in the hospital and I rejected the transplant twice but the feed tube they gave me in a main vein got infected and I got another rare disease the Rhototorula(sp) that killed my kidneys then slowly went for my heard. It is a fungus in the blood that you can only get from and main vein IV. They think I got the WG from all of this but I think I had it before because >I was always going deaf and having operations on my ears and started to go blind add the kidney trouble from the RHT and you basically have wegerners, then a few years later they discovered that I had -WG. It does attack the weakest place because every time I had surgery a few months later something came and ate all of the new part.I now don't exist in the files of the first hospital because they screwed up really badly so they say they have no records of me ever being in that hospital, WE were there Xmas, New Year and three Kings. I never had colds or chest problems as a child and was never sick.

[Debbie C]

When I was a child (About 2 yrs old ) I had whooping cough and broncitsis (sp ?) at the same and almost died, I have also had pnemonia a couple of times and my involvement is basicly in my lungs. I also had ear infections (which I believe was wg in hiding )was given anti-biotics 3 different kinds and ended up very sick with c-diff.But lately my eyes have been bothering me and also I've been getting headaches and dizzy. I had a ct scan of my brain which should a 1 cm white mass on the left side of my brain but no one seems to concerned about that either. I had in infartic stroke and 5 tia's at sometime which I did not know about. So there may be something to wg hitting the weakest point , but then why would there not be people who are really sick with other diseases also end up with wg ?

[Reetsky]

I also had whooping cough as a baby. The symptoms and synchronicity just keeps growing with us on this forum. The more questions I ask the more posters respond with similar tales.

[annekat]

When I was about 5, my parents were told I could not use feather pillows and had me outfitted with a foam rubber one. This was before today's polyester fill. I don't remember having symptoms, but the doc said I was allergic. I had a lot of bronchitis as a child and a fair amount of asthma and allergies that were not properly dealt with. I had a lot of stress as a child and as an adult and think that it played a role in the asthma, too. Nothing like whooping cough, though. And no ear infections that I know of until the big one that got me at age 56 and was probably the onset of Wegs.

[Barry Forshaw]

When I was a child (About 2 yrs old ) I had whooping cough and broncitsis (sp ?) at the same and almost died, I have also had pnemonia a couple of times and my involvement is basicly in my lungs. I also had ear infections (which I believe was wg in hiding )was given anti-biotics 3 different kinds and ended up very sick with c-diff.But lately my eyes have been bothering me and also I've been getting headaches and dizzy. I had a ct scan of my brain which should a 1 cm white mass on the left side of my brain but no one seems to concerned about that either. I had in infartic stroke and 5 tia's at sometime which I did not know about. So there may be something to wg hitting the weakest point , but then why would there not be people who are really sick with other diseases also end up with wg ?

I wonder if it might be the other way around. What if the Wegener's is there lying dormant in the genes making some areas vulnerable to infection and disease? Over the years you have higher than normal problems in these areas. Then when the actual trigger for Wegener's (whatever that may be) hits the vulnerable areas the Wegener's can gain a proper foothold.

As for the stress, I don't know if it's an actual trigger but it's certainly not going to help. I know from experience that my wife, Alicia's, Wegener's has hit her much harder and her recovery has been slower when she's stressed.

[mishb]

But then, we have heard of a two year old and a three year old with WG.
What stress would this little kiddie have - it doesn't make sense

[Dirty Don]

Stress is associated with mental and emotional, but it's physical/chemical, so a little kid would suffer from stresses of sorts too.

[marys4373]

I totally agree with you that Drs. are inclined to consider common diagnosis with the symptoms they see. Every time I see a new doctor they say that I am very complex. I reply that it is going to take someone to sit down and pull it together (look outside the box) to come up with the diagnosis. Since my journey started with granulomas in my lungs I have seen a total of 24 plus different doctors. I have to say I am coming closer to a diagnosis. So far I know what is not wrong with me (that is a good thing).

[Dirty Don]

I totally agree with you that Drs. are inclined to consider common diagnosis with the symptoms they see. Every time I see a new doctor they say that I am very complex. I reply that it is going to take someone to sit down and pull it together (look outside the box) to come up with the diagnosis. Since my journey started with granulomas in my lungs I have seen a total of 24 plus different doctors. I have to say I am coming closer to a diagnosis. So far I know what is not wrong with me (that is a good thing).

Do you have access to Mayo in Rochester?

[marys4373]

Do you have access to Mayo in Rochester?

Yes, this is where I doctor all the time as I live there. I am very fortunate. I do understand Mayo is a teaching clinic but sometimes it drives you crazy.