H1N1 - the girl who kicked the hornet's nest

[Sangye]

I too had the H1N1 vaccine in the late fall, a few months before I got sick. I wonder if any one of the specific vaccines is more likely than others? I wish I knew which version I had at the time.

Bob, your doctor will have the name of it in your chart.

[Kathie28]

I had the H1N1 vaccine about 6 months before I had symptoms of Wegs so I'm not to sure that was the actual kicker for me but who knows. I did get toothpaste in my eye a couple of weeks before everything started which caused an eye infection. I also got a sinus infection about that same time. I wonder if a toxin in the tooth paste was the trigger. It would be so nice to have an answer to the why.

[malin]

I can count the vaccines that I've had on one hand, most of them are the type of vaccines you get as a baby

Never had the flu vaccines before my Wegs symptoms started, I only got the flu vaccines AFTER diagnosis and leading up to my first symptoms of Wegs, nothing at all happened to me. No infections, no known exposure to anything unusual and toxic, not even a "normal" cold. Also leading up to Wegs, the worst illness I ever had before was probably like chickenpox and then just the odd cold. I used to be a very very healthy kid.

So for me, I can't see any cause of my Wegs at all I just believe that I was unlucky and there was nothing I could have done differently.

[freakyschizogirl]

Snap with Malin, I didn't have any vaccines leading up to dx. I only had the flu and swine flu jabs last year as they are recommended if you are immune compromised. I was relectuant to have the swine flu jab but the nurses at my surgery rarely take no for an answer and in the end i felt like maybe i was being reckless not having it as i knew people who'd had swine flu.

In the 3 years following up to dx i did have a lot of infections and didnt really think much of it...i went from tonsilitis, cystitis, eye infections, a boil...basically any time i visited my doctor was for anti biotics. Sometimes i'm surprised she hadnt already written out the perscription before i walked in the room!

I can sit for hours thinking about my time leading up to finally being diagnosed and what the trigger could be. I remember the first day of symptoms cos it was so outta the blue...i was sitting having breakfast and all done up for work as we were having a 50's/60's/70's dress up day and i was quite excited cos i love dressing up (any excuse with me!) During breakfast my nose started to bleed and didnt stop and was literally POURING with blood...scared the hell outta me - i was literally standing over the kitchen sink not knowing what to do.
Following that i had lots of pain in my nose and then followed the crusting. But these things come on so slowly you dont really notice til they get bad. My GP only refered me to ENT when i had trouble breathing at night from the crusting and this caused me to snore.

I'll never know what triggered my Wegs. The only regret i do have is that i didnt push for better care when i was being pushed around from one ENT to the next with no real answers and that it didnt take my perforation and saddle nose to finally diagnose me.

[malin]

Another thing that interests me is that alot of people have symptoms for years/half a year before finally getting a diagnosis, with me everything happened very very fast. It only took less than 2 months from my first symptoms until I was diagnosed. During this period I went from my ears feeling a bit stuffy (thought it was just ear wax) til lying in a hospital bed completely deaf and feeling so ill I could barely go to the toilet on my own! My mom had to help me get showered etc...

I'm just amazed at how different Wegs can be between people. I mean it can be this long outdrawn process or it can be so acute and immediately life threatening that every single minute counts. :/

[Psyborg]

Bob, your doctor will have the name of it in your chart.

I ended up getting it post-surgery before leaving the hospital. I'd have to get my chart from them rather than the doctor. (I think)

[Jack]

Hind sight is a wonderful thing isn't it? I wish that the internet had been available when my first symptoms appeared because for nearly two years I was treated for sinus problems when it should have been obvious that this was not the problem. The ENT pretty well dismissed the other symptoms I was displaying - joints, skin, eyes, although I did have referrals for these which all came to nothing. None of the specialists seemed to put the whole picture together and consider what was happening to my body as a whole.

I think that these days there is less excuse for doctors failing to diagnose Wegener's even though it is still rare.

[drz]

Hind sight is a wonderful thing isn't it? I wish that the internet had been available when my first symptoms appeared because for nearly two years I was treated for sinus problems when it should have been obvious that this was not the problem. The ENT pretty well dismissed the other symptoms I was displaying - joints, skin, eyes, although I did have referrals for these which all came to nothing. None of the specialists seemed to put the whole picture together and consider what was happening to my body as a whole.

I think that these days there is less excuse for doctors failing to diagnose Wegener's even though it is still rare.

My experience was same as Jacks. Saw at least a dozen different doctors, most of them several times for routine care for my diabetes and my complaints about the same GPA symptoms. I was scheduled to see three more specialists when it all collapsed and I ended up in the hospital where I was misdiagnosed and treated for three problems I did not have. Only two doctors, a podiatrist and optometrist, neither were a MD, during this time hinted I might have some underlying disorder like lupus or some systemic disorder. I had hand surgery for Duprytrens Contractures at Mayo during this time and asked my surgeon about cramps and joint pain and it was passed off due to my other disorders. Maybe if I had pushed for a referral to another department for a more through evaluation I might have got correctly diagnosed a couple years earlier but none of my other evaluations had turned up anything to explain my symptoms and I never dreamed that things like joint pain could be related to an eye problem and nose bleeds and no one else did either except for those two doctors I mentioned.

[jola57]

The only probable cause of getting wegs (I will always call it that) that I have heard of is untreated infection. Mine can be my burst appendix. Yes, hindside is great but the reality is we still do not know what causes wegs and untill we do we will always look for reasons why.

[Sangye]

Somehow this thread topic has turned into What Caused My Wegs. I think it's still salvageable as a discussion about the H1N1 shot so I'm gonna throw down a Putin. LOL