Healthy mummy yesterday, Wegeners today!

[Megan]

Hey guys!

my name is Megan and I've just been diagnosed. It has come completely out of the blue and its fair to say I'm still in shock. Basically, I have suffered chronic sinusitis since I was about 13 (now 37), and blocked nose and hay fever just my lot in life. About three months ago my hubby told me my snoring was out of control and so I booked in to a Ear Nose and Throat specialist to see about an op to clear the sinus.
Well he did a scope and found the damage from the Wegeners in my sinuses, thankfully throat clear and sent me off for bloods and chest X-ray! Three days later I was back to him with a positive auto immune disease result and booked in to an immunologist the following week. Longest week in my life, not knowing if it was in my lungs or kidneys or the extent/progression of the disease.
The immunologist confirmed I have the disease and thank God it's not in my lungs or kidneys so we have caught it early.
Ive started 75mg steroids a day and find out this week when we start chemo. I'm a mum of a two and four year old and had no idea I was sick. I've been reading a lot of comments about your symptoms and when you have relapses and I'm so confused because besides snoring, I had no idea that there was anything wrong with me.
Anyway, I wanted to introduce myself and thank you all for sharing your stories, I'm guessing I'm going to be logging on here a fair bit so hope to be a support to you too.


take care,
megan

[mishb]

Hi Megan and welcome.

I am so glad that your ENT was on the ball and so glad he actually tested for Wegener's.

Sometimes people can have Wegener's smouldering away for years without even knowing they have it and then all of a sudden - BAMM !!!

I am so thankful that you were diagnosed before the BAMM - don't wish yourself to have all the symptoms that everyone on here has.

Make sure you follow the specialists advice and take whatever meds they give you so that you can find a very quick remission without ever having to feel the harmful and painful effects of a full blown Wegener's attack.

What Country are you from?

If you have any questions, there is an amazing amount of people on this forum that will be able to help.

Take care and ..............

[Megan]

Hi Michelle,

thanks for your lovely comments. I'm in Brisbane, Australia and feel so lucky to have a specialist that knows his stuff and feels confident in our path together.
Does anyone know why he wants me to have a MRI to check my pituitary gland? I can't find any research that links WG to pituitary glands.

Where are you from Michelle? How long have you had Wegeners for?

all the best to you,
Megan

[mishb]

Megan I'm from Melbourne.

We seem to have a few Brisbane people joining here in the last couple of days.
Maybe I have already said hello to you before.

I have had WG since July 2009 and diagnosis in August 2010.

If you are on facebook, you should join our Australia and New Zealand WG/GPA Group.
Below is the link

https://www.facebook.com/groups/516643745050360/

[Pete]

Hi Megan,

Greetings from the other side of the world. Glad you found us, but sorry you needed to.

Sounds like the disease hasn't disrupted your life too much. Staying symptom free is a balancing act of diet, medication, exercise, and attitude. Find good docs, listen to them, and live your life. A pretty normal lifestyle is possible with this disease. You just have to be aware of the messages your body will send you...

[lag713]

Welcome, Megan! I know it must be a shock but it's all about perspective. You now have the opportunity to get ahead of the disease. I had constant sinusitis as well but always assumed it was allergies. I even annoyed my poor colleagues at a conference when I snored in our shared hotel room. I found out that I have a deviated septum but I'm not sure when that happened as I had never heard that from a doctor before. The only thing that brought me to the rheumatologist was joint pain. At 26 years old, I thought it was carpal tunnel but it was ruled out quickly.

In many ways, you are lucky that it was caught given your nonspecific symptoms. I know it is a scary diagnosis but we are here for you. Good luck with beginning your treatment!

[annekat]

Welcome, Megan! I'm glad you have found us. There is a variety of ways we each start our Wegs experience, some smolder for years, and then Bamm! as Michelle said. Others have sinusitis-like symptoms for years and then suddenly it gets a whole lot worse and maybe goes to their lungs and/or kidneys. Some just have a bunch of joint pain or nerve pain that turns out to be Wegs. It is a weird disease, for sure. I'm glad you seem to be catching yours at the right time and that you have good doctors who seem to be on the ball. I can't answer about the pituitary but I know there is someone on here who can, if he sees this. In any case, this forum is the greatest place to be if you have to have Wegs, and we are very accepting of rants and venting and long stories, and very responsive to most questions and concerns. I hope to hear more from you soon, either about your own experience or in response to others' posts. Keep us updated on how things go.

[vdub]

I llost my pituitary due to wegs. Its called Granulomatosous Hypophysitis and is about 35 times more rare than GPA. There are some links to it in "my story" below. If you have it you would be about #26 or so. It seems I heard that #25 showed up. I'm #24 and a young lady in Denver is #23.

Why would he check? The blood test may have shown low TSH or low ATCH -- that would be the easiest and most obvious thing to look at, but is not a normal blood test. Google hypopit and check the symptoms, but don't let it scare you -- it is super, super rare.

[feliciamings]

Hi Megan!

I was diagnosed in Nov of 2012. I had always been incredibly healthy until I started coughing up blood, got insanely tired and it all culminated in bi-lateral edema that put me in a wheelchair before I was diagnosed.

What kind of chemo are they talking about putting you on?
- Felicia