Hi all

[Snickerz]

I originally thought I had an ear infection, which was getting worse, when the pain was unbearable I went to hospital (where I work) and was sent home. The next day I woke with facial paralysis and went back to hospital where I was admitted rather rapidly. I got increasingly unwell and had a mastoidectomy on 24/12. I got increasingly unwell and was on piles of antibiotics, my first ANCA was neg. Eventually after multiple biopsies and blood tests got a diagnosis of wegeners, changed treatment and started to get better. I had already lost 15kg, gotten really depressed and its taking a long time to recover.

Currently my lung granulomas are breaking up, on meth and decreasing dose of pred. Had every horrible side effect I could imagine. Getting stronger. Due to pred look like the side of a house, back at work, slowly getting back to normal.

[annekat]

Welcome, Snickerz. Quite a few of us, including me, started with a big ear infection. I'm glad you found us, as this is the best place to be for anyone with WG. You will find a ton of info, support, and friendship, and feel so much less alone. We have a very open attitude about people's need to vent from time to time, as well as ask whatever questions and share whatever experiences. With members all over the world, and quite a few in Australia, there will almost always be someone online to see and respond to your posts. If you have some time on your hands, do some searches in the archives to see all kinds of posts and threads on all the aspects of the disease and its treatment. I'm glad you feel you are getting better; hang in there, and keep us posted!

[kaysee]

Welcome to the forum Snickerz,
I had that "thought is was an ear infection" twice before I was diagnosed. I know how painful it is. All the antibiotics they gave me for it just killed all the good bacteria in my intestinal trac. Then I had further problems from that and I could not eat. I lot 40 pounds and ended up in the hospital dehydrated. But they still did not diagnose WG at that time. It took another year to figure it out.
You have found a good place on the forum to just vent or get questions answered. We are not docs but have a lot of experience with this disease.

[Snickerz]

Thanks guys.
Since this is such a rare disease most doctors do not have much experience, I think 4 in 1 million were the last stats I found. So lived experience is probably the most helpful. Im interested to see if others had same recovery issues I did. I had different symptoms each week. The weirdest was joint pain starting from ankles and working its way up each week. Then I had a few weeks where my joint completely ceased up. Also anyone else have facial palsy. The granuloma compressed my facial nerve and is slowly....slowly recovering, I looked like I had had a stroke

[annekat]

The most common stat I've heard in the 4 years since diagnosis is 1:30,000. But it may easily depend on whom you ask and what is their method of getting the statistic. I would generally trust whatever stats they are giving on websites like those of the Cleveland Clinic, Mayo, or Johns Hopkins. But even those can be out of date. You are correct about docs having little experience due to the rarity. Here is a link to some of the best experts in the field: VF Medical Consultants . And here is the list of New Specialists from the same site: New Specialists . It's a bit of work to scan all the names and see if any are in Australia. But it is said that any specialist on the list will provide consulting services for free with any docs that feel the need.

No facial paralysis here, but I remember someone not long ago who had a pretty severe case, and perhaps they will see this.

[JimmyJames]

Like others have said mine started with an ear infection and progressed from there. Similar to you from the time of the first aggressive symptoms to the time I was diagnosed I had lost almost 50 pounds, I have gain all of that back plus some but that is a story for another day. I hope they can get you on a medication dosage combination that can limit your side effect and maximize the effectiveness soon. You will get back to normal, it just takes time.

[Swb21188]

Hi Snickerz

Before diagnosis my parotid gland became swollen and inflamed which as well as being painful it reduced blood flow to the facial nerves. This resulted in dumbness in the side of my face. Even after three years it's still partially dumb.

[annekat]

Hi Snickerz

Before diagnosis my parotid gland became swollen and inflamed which as well as being painful it reduced blood flow to the facial nerves. This resulted in dumbness in the side of my face. Even after three years it's still partially dumb.

I also had a swollen parotid gland right before dx. Just not as bad as yours and not causing any pain, numbness or lasting effects. The swelling went down quickly with treatment. It is interesting how our cases are all a little different. I've heard of a couple of other swollen parotid glands on here, but not many.

[drz]

I also had a swollen parotid gland right before dx. Just not as bad as yours and not causing any pain, numbness or lasting effects. The swelling went down quickly with treatment. It is interesting how our cases are all a little different. I've heard of a couple of other swollen parotid glands on here, but not many.

I had one many years before Wegs and it had little pain. A doctor thought it was cyst and tried to remove it. It took years for feeling on that side to return.

[mishb]

Hi Snickerz and welcome.

I'm sorry it has taken me so long to get to this thread I have been holidaying overseas and the wifi connections weren't so great in the hotels.

Your figures for people diagnosed with WG are a bit outdated I think.

We have a facebook group for Australians and New Zealanders, if you are interested, with many members from NSW and more specifically from the Sydney area.
There are also some very knowledgeable specialists for WG, practising in NSW, that I am aware of.
If you are on fb and have not already joined our Group, we would love to have you.

The facebook group page is https://www.facebook.com/groups/516643745050360/