Has anyone ever heard?

[whatthewhat]

Hi there all. It took 9 months before I was dx. It began like a cold with a constantly runny nose that was within a week accompanied with a 24/7 headache resembling a hang over type headache. At 5 months had fleeting double vision and fatigue kicking in. At 7 months full blown double vision. At 9 months had sinus surgery. Straight after, still cross eyed started to rapidly loose my vision. Headache still severe. Massive fatigue. Sent to the eye and ear hospital in Melbourne and had 5 days of intense tests. At this stage blind in one eye and 30 percent in the other. Had a pseudo tumor growing rapidly behind the right eye squashing my optic nerves. My left eye was bulging and the pupil was looking skyward.
A biopsy was carried out on the tumor behind the right eye which concluded the presence of the disease.
That wasn't the end of the story, just the beginning.

One of the pediatric weggies I know started off with the orbital pseudo tumor...it derailed the diagnosis for awhile I think.

[whatthewhat]

As I type this I'm wearing a Wegeners Granulomatosis awareness T-shirt. It lists on the back symptoms to be aware of. I had hand-wrote in "growing pains" also :-) Almost all of the pediatric weggies I know, including our daughter, had "growing pains" for a significant amount of time, and "allergies" or sinus infections or ear infections, before diagnosis. Unfortunately for almost all pediatric weggies diagnosis comes through lung hemmoraging or kidney failure. :-(

[Birdie]

Unfortunately for almost all pediatric weggies diagnosis comes through lung hemmoraging or kidney failure. :-(

And how many die without being diagnosed, when diagnosis could have resulted in a long productive life? Like licks to the center of a tootsie pop, the world may never know.

[annekat]

As I type this I'm wearing a Wegeners Granulomatosis awareness T-shirt. It lists on the back symptoms to be aware of. I had hand-wrote in "growing pains" also :-) Almost all of the pediatric weggies I know, including our daughter, had "growing pains" for a significant amount of time, and "allergies" or sinus infections or ear infections, before diagnosis. Unfortunately for almost all pediatric weggies diagnosis comes through lung hemmoraging or kidney failure. :-(

That's a crime, that "typical childhood syndromes" like ear infections, allergies, and "growing pains" are overlooked just because the patients are children.... until they get so much worse and major organs are involved. When are doctors going to learn not to just categorize things as normal or typical and not think twice about it? Makes me mad.

[annekat]

Guessing the suckage would go down if WG were more common and better understood so it didn't require a fight with health care. If you say cancer everybody in the world expects it to be serious even tho many cancers are not terribly serious. The "C" word gets immediate action while the "G" word gets "what's that?"
followed by not much...

You betcha. I was trying to get a penalty waiver for late payment of retail sales taxes to the state collected in the course of pottery sales. I mentioned on the phone about my chronic illness, medical bills, etc., and was asked "do you have cancer?" Can you imagine the silence at the other end if I had said, "no, but I have Wegener's Granulomatosis", or even worse, "Granulomatosis with Polyangiitis".... ? I just said, "no". I could have tried harder, I guess.

[WG mom]

My daughter falls into that category, although while she is managing, she is still not in "remission." She continues to be on 10mg of prednisone , down from a high of 60 about 18 months ago. She still takes Bactrim. And is scheduled for another rituxan infusion in October. The good news is the disease remains localized in her respiratory tract. She still fatigues, gets headaches and is vulnerable to sinus infections. The cartlidge in her nose continues to collapse so her saddle nose is getting worse. Hopeful once she has stabilized she can have surgery. So, yes, to answer your question scottgirl.

[drz]

You betcha. I was trying to get a penalty waiver for late payment of retail sales taxes to the state collected in the course of pottery sales. I mentioned on the phone about my chronic illness, medical bills, etc., and was asked "do you have cancer?" Can you imagine the silence at the other end if I had said, "no, but I have Wegener's Granulomatosis", or even worse, "Granulomatosis with Polyangiitis".... ? I just said, "no". I could have tried harder, I guess.

I think we have to try inform people that GPA is a very serious medical disease when they are inclined to blow it off. So I have responded to this sometimes with something like this "No, I have something worse. Cancer can be cured. I have a rare chronic disease that is difficult to treat and not curable like cancer. But I am still here and doing pretty well despite my rare disease."

Then if they want details I can add some like I spent six months in hospitals and nursing home five years ago. It took a year or two after being a drug induced coma for a couple weeks before I could walk around the block again. I can list the damages and losses like kidney function, lung function, hearing, balance and having enormous fatigue. And comment again that I am very glad to be alive and enjoying my life despite my new limitations.

If we really want to get preachy we can add some of Martha's facts like a lot more money is spent on treating autoimmune disorders than cancer but very little is spent on research to prevent it or treat it.

And check out this link:
http://www.diabetesed.net/page/_file...e-diseases.pdf

[annekat]

I agree with you, drz. I was talking to one phone representative in a bureaucracy, not someone in a position to show me some leniency or to sit and listen while I tried to educate her about what I have. I could have found out, though, what their actual guidelines are for giving people waivers or extensions, and if there was any chance of pleading my case, or what channels I could go through to educate the agency. But in fact, I have been over this before with them, there are certain rules, and I'm not even sure that having cancer would be an automatic excuse under every circumstance. There is info about these waivers on their website. In fact, I think I did get one once, but it was only available if I'd been on time for the past year or some such. The fact remains that I was negligent in not setting aside the sales tax so that I could submit it to the state on time. I just thought the conversation was worth mentioning as an example of the 'C' word being so all important above all others, but am not even sure that it was part of the representative's job to mention it, and if I'd said yes, I have cancer, I doubt she personally could have done anything but advise me as to procedures. I should have questioned her further, at least.

[Trena]

Wow...it's interesting reading about how long it took to get a proper diagnosis. I started to get sick in January 2015 thinking that it was a cold/flu or bad allergy issue. After two months and 5 different antibiotics (2 prescribed from my ENT) I ended up with a painful and numbing feeling in my left foot and left hand and immediately went to the hospital...feeling like a complete zombie. I was immediately admitted, properly diagnosed after about a week (after many many tests ruling other things out) and they immediately started me on the proper treatment at the end of March. Then in July I was told that they now considered me to be in remission after just 3 months of chemotherapy. I had lung and kidney involvement and I'm told that my kidney has "some" permanent damage, yet my lungs and kidneys are overall pretty good. I still have hearing damage and neuropathy issues, yet I'm very thankful that my doctors have been so quick with treatment.

[annekat]

Often it takes a really severe case, or something dramatic like that numbing pain in your foot and hand, to get the docs to look beyond just allergies, recurrent sinus issues, or flu-like symptoms.