just saying hi

[penguin]

Hi everyone! I'm new to the site but not new to WG, I was diagnosed last year, but have had it for years as my doctor told me there was nothing wrong with me! I'm just finishing my cyclo treatment, still on preds, but just finished school and got into university! So I'm feeling pretty good at the moment and would love to chat to people, didn't realise there were other people my age with WG!!

[Sangye]

Hi Penguin, welcome to the group! I saw in another post that you're 18. We have several younger members. We actually have members of all ages ranging from newly-diagnosed to long-time veterans so you can ask or share anything and there will always be someone to relate to.

I think it's great that our group has an Elephant and a Penguin. If we get a Monkey we could charge admission.

[Rini]

HI! so what was ur major symptom? nose? lung? how did they finally decided WG? (i forgot, I said I was 18 but i just had a B-day, i'm 19)

[Psyborg]

Welcome

[penguin]

Thanks
Well I'd always suffered from joint pain and kept telling my doc about it who said it was 'growing pains' and although I tried to tell them it was getting worse, even when I went in with swollen joints and rashes on my legs and arms, they would just give me antibiotics and send me away. I'd noticed that my lungs weren't very good either and had mentioned this a few times, I was given advice of different activities I could do to 'get fit'! And when I was on holiday in Spain last year I began coughing up a lot of blood and couldn't even walk by the end of my holiday - my dad had to carry me off the plane, the pains were so bad, so they finally put me in hospital, repeated bloods - the ANCA was positive and they told me it had been positive before but they had ignored it because I was so young! Anyways, had a kidney biopsy (ergh) and then started cyclo. So yeahh thats pretty much it, joints & lungs mainly. What about you guys??

[elephant]

Hi and welcome. It take a while for the docs to figure stuff out, but glad they finally did. How is your kidney function?

[penguin]

My kidneys were affected but not badly.

[elephant]

Make sure you have a kidney doctor to check your blood work.

[vdub]

Believe I read somewhere that the average dx time for wegs is 24 months. And, as far as I know, that was the case for me, at least for the part of wegs that led to the dx. I will never know, but I think my wegs might have started in 1961 when I was 10 years old. They had no idea what I had, but they put me on large doses of cortisone and I got better. I was sick for a year and then fine for the next 50 years. I'll never know if I have been living with wegs my entire life.

Welcome to the site. Sadly, we have quite a few young people on it.

[norcalian]

Yeah, I was surprised by how many young people i see on this site with WG. I was like you Penguin, joints, lungs (the kidneys came after I got out of the hospital - but it's pretty minor and it looks as though it might be under control now). I was fortunate though that I had a good primary care physician who took my symptoms seriously and ran a bunch of tests when I wasn't getting better - however, it still took getting admitted to hospital to get the actual diagnosis. I did spend a couple of years with sinus issues and then middle ear issues that i'm sure was the Wegs getting started (so I guess I fit vdub's 24 month timeframe).

Welcome to the site. I've only been here a month, but it's been an amazing resource.