Just diagnosed

**allyislovexx** · 07-10-2009, 03:22 AM

Hi everyone. My name is Ally and I am 19 years old. I was just diagnosed Monday although my doctors have been telling me for awhile they thought it was Wegener's. I have an ENT appointment today in NYC to talk about starting azathioprione and high doses of prednisone. I am currently on plaquenil and bactrim. It's nice to read stories from other people who are going through some of the same things I have been through!

**crackers** · 07-10-2009, 03:59 AM

hi ally.sadly welcome to our family of weggies.it's good to see that you're getting treatment.how long did it take to get your diagnosis and what were your symptoms.as you say you can learn a lot by reading the other posts and other peoples experiences.please come back soon.
john.

**Jack** · 07-10-2009, 04:17 AM

Hi Ally,
Sorry to hear of your diagnosis, I'm guessing that your symptoms must be quite mild given the fairly relaxed reaction of your medics. The usual treatment tends to be an emergency admission followed by something a bit more toxic than Azothiaprine, but if your current treatment is working, great!

Perhaps you can get round to posting your story at some time, it is always interesting to hear other's experiences with the disease.

**jola57** · 07-10-2009, 09:37 AM

Welcome Ally, as you must have read we are a quirky bunch with multitude of stories to share, so please tell us yours. what were your first symptoms how long and such. You seem in good spirits, so I send you back a

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**CanadianGuy** · 07-11-2009, 12:54 AM

Hello Ally,
Welcome to this excellent forum!

I'm a newbie on this site as well.... but I can tell you that I am a father of a daughter who has WG. She's 21 years old and hopefully she'll be part of this forum soon! You'll find that there are very kind and supportive people here... I guess that's the good part of the disease!
Good luck at the ENT!!!

All the best,
Guy

**Sangye** · 07-13-2009, 01:33 PM

Hi Ally,
Welcome to the group. I still always feel like I got the wind knocked out of me to hear someone so young having to deal with Wegs. Please share your story when you're up to it. I hope all went well at the doc's.

**andrew** · 07-15-2009, 07:33 AM

Hi Ally and welcome! How was the appointment with the ENT?

Doug · 07-15-2009, 07:53 AM

Ally- I hope you find the information in this forum helpful, and use it as a basis for formulating questions for your doctors. They like a pop quiz, you know!

**allyislovexx** · 07-15-2009, 01:07 PM

hi everyone! i havent been hit too hard thank god, and i actually found out i had vasculitis by having a skin biopsy done on blisters i was getting that were mostly forming on my face. i would get a couple on my shoulders, and chest. then i was sent to a rheumatologist, but after having been to a million doctors before who had told me the blisters were "infected pimples" "MRSA" "folliculitis" me and my mom didn't like my rheumatologist because quite frankly she had no idea what she was dealing with because i was her only vasculitis patient, every other one had RA. my ma wrote to johns hopkins and i had an appointment there, thats when i started plaquenil. at that time my symptoms were the skin sores, muscle aches, headaches, bone aches, fatigue. As time went on I began to lose weight, about 10-15 pounds, I began having worse and worse sinus problems, more sinus infections roughly about 1 a month that needed medication, tooth aches, numbness and tingling in my feet, hands, and nose, (My dr says I have reynauds) severe neck pain, and bad headaches. i was getting migraines once a day so i took topamax. recently i went to the bahamas and found it difficult to breathe in the heat, it felt almost like a weight was on my chest mixed with heartburn in my lungs. I thought that it was normal and that everyone on the trip probably experienced it but when asked they didnt. When I got back home, my doctor noticed a wheeze when I breathed. Thats why we are starting the azathiprione and prednisone because of the wheezing and the constant sinus problems.