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allyislovexx
07-10-2009, 02:22 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, 02:59 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, 03:17 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, 08:37 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 :))

CanadianGuy
07-10-2009, 11:54 PM
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, 12:33 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, 06:33 AM
Hi Ally and welcome! How was the appointment with the ENT?

Doug
07-15-2009, 06:53 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, 12:07 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.

Sangye
07-15-2009, 12:10 PM
Who'd you see at Johns Hopkins? That's where I go, and I just love my docs there.

allyislovexx
07-16-2009, 01:15 AM
doctor seo.. hes great. who do you see?

Sangye
07-16-2009, 01:17 AM
Dr Seo!! Very funny guy. Do you still see him, or is he at least consulting/conspiring (that's a Seo joke) with your local docs? Please tell me yes. I'll sleep better knowing he's got your back.

allyislovexx
07-17-2009, 05:51 AM
yeah i am still seeing him every 3 months

Sangye
07-17-2009, 07:37 AM
(Whew!) Hey, since Doug and Lisa proved 2 Weggies can occupy the same space without threatening the planet's future, let me know when you're there-- if I'm there too, we can say hello!

allyislovexx
07-17-2009, 09:14 AM
okay! my next appointments at the end of september, the 23rd. whens yours?

Sangye
07-17-2009, 09:29 AM
He wanted to see me again in 3 months. I'll see if I can get in on Sept 23, since that's just one week short of 3 months. It'd be great to meet another Weggie!

coffeelover
07-18-2009, 04:47 AM
It'd be great to meet another Weggie!

Highly recommended. Hope it works out for you.
Lisa

Doug
07-18-2009, 11:52 PM
Highly recommended. Hope it works out for you.
Lisa

I concur! Lisa, her husband Dennis, the dogs and I had a wonderful visit. It was like we knew each other forever! Videotape or photograph it if you can so we all can enjoy the visit! :) (p.s. despite the Spieldoug/Dougberg, etc. references, my efforts, to date, are slightly more sophisticated than they were in April, but not so good as they will be once I get this editing business in control!):p

Sangye
07-31-2009, 02:12 AM
Ally, the only appt I could get on Sept 23 was at 8 am. That would mean getting up at 4:30 am (I live 1.5-2 hrs away, have 3 animals to take care of, and move pretty slowly in the morning!) Doing an appt so early would do me in for several days, and I definitely would not be very social!

I got an appt on Sept 30 instead. If you happen to be there that day, let me know.

jola57
08-09-2009, 01:59 AM
Wanted to meet some weggies in UK when I was vacationing but it just didn't work out.

Jack
08-09-2009, 02:02 AM
That was a bad few days for us over here. We all had to hide behind the setee! ;)

jola57
08-09-2009, 02:07 AM
Was that the big scary couch?

Jack
08-09-2009, 02:58 AM
http://i25.photobucket.com/albums/c56/1955diesel/sofa.gif

jola57
08-09-2009, 03:21 AM
Oh Jack you are marvelous:D:D:D:D '.)

Doug
08-09-2009, 03:40 AM
How droll!

coffeelover
08-10-2009, 12:08 AM
I suggest not giving up on trying to meet up with other WEGGIES. Right Doug?
That meeting goes a long way in support.

I wonder what would happen if Doug and Jack ever met? Seems to be some personality conflicts there???
LIsa

Doug
08-10-2009, 04:44 AM
If we met in England, I suspect there would be a meeting of minds over a properly brewed cup of tea and two lovely dogs. (I don't know if Ms. Sue would tolerate having two fairly opinionated people in her parlor at the same time, so we'd have it outside, on the patio or grass, whichever shows blood less, just in case we didn't get along! Haw!) If we met in Nebraska, we'd have to sit in the frontroom, making a video, like Lisa and I did, to prove to all of you there is no tension between us that a few battling words (to sort out territorial issues) and some therapeutic beating of my SpongeBob SquarePants pillow can't resolve. First, we'd have to establish which topics are too hot for use to handle: 1. The Revolutionary War/Rebellion Against the Crown; 1. which language I speak, if not English; 3. who gave Jack the authority to establish that I don't speak English; 4. whether I am a Yank or A High Plainsman or Westerner 5. whether it's a boot or a trunk, a windscreen or a windshield; which of us, English or American, drives on the "wrong side of the street"; 6. whether or not the English should fully join the EU by accepting the Euro; etc. So you see, there is a big role for the hounds to play. Besides, I've never been to England! It would be fun.:)

Luce
08-10-2009, 05:59 AM
Just one thing Doug - I believe you might have mistaken John's wife for Jack's (unless Jack also has a Ms Sue in his life)....

Jack
08-10-2009, 06:01 AM
I'm sure we would get on just fine. We try to be tolerant of our former colonies now that they are trying to make their way in the world. ;)


By the way -

I don't like tea, but I'm told that I make it very well.

English is the best language in the world, we are quite happy to steal words and expressions from any culture (even American :eek:) if they are useful and call them our own.

I love dogs. Always had one as a child, but don't want the trouble of keeping one now. The two rabbits and two gerbils are plenty!

I think we may have to stear clear of religion as a topic. We would not agree on that one.

Sangye
08-10-2009, 06:41 AM
You guys are so funny! I think you'd get along great, but just in case, I'll let you borrow my dog Patch for the day. He's a good diplomat. Really-- he has no tolerance for arguments or even raised voices. He starts mooing. And "splitting."

(Splitting is a dog/ wolf behavior that breaks up building tension between two dogs. A third dog, sensing tension, will start casually walking back and forth between the two dogs. It calms them down by distracting them and by showing that since another dog isn't riled up, it must be safe. You can see it all the time at dog parks. It's also why, when you see building tension between dogs, the worst thing to do is move quickly. It sends a signal of reaction.) Gee, how'd I get sidetracked into dog talk??

crackers
08-10-2009, 06:45 AM
doug you'd be welcome in the uk as long as you kept away from hyde park corner (speakers corner) on a sunday morning.i get the feeling once you got started there'd be no stopping you.:D
john.

Sangye
08-10-2009, 06:51 AM
OMG you're totally right. I've been there, and I think Doug should be banned. And me, too, for good measure.

crackers
08-10-2009, 07:26 AM
you said it sangye.
john.

Sangye
08-10-2009, 07:36 AM
Although I am not that comfortable with speaking in public....

Doug
08-10-2009, 08:55 AM
Just one thing Doug - I believe you might have mistaken John's wife for Jack's (unless Jack also has a Ms Sue in his life)....

Don't be such a Fussy Budget! Ha! Ooops! I know you are right. Jack Kennedy/John Kennedy. Wherever the two became equivalents I don't know, but I am just one the development's victims.

Doug
08-10-2009, 09:04 AM
P.S. I apologize to both these gentlemen, Jack and John, but especially to Sue, who probably would object to moving in with another family at this point, let alone working as the "splitter". Dang! Now I owe Sue an apology for implying she's a she-dog. The poor woman: I tear her away from a perfectly fine husband and family and two beautiful dogs, I call her a name, I stick her with John (or is it Jack- at this point the damage's done...), she'll probably have to make the tea and dainties since it's John or Jack who makes it but not the one she's married to.:eek::eek::eek::eek:


(At this point, you'll have to find me in Hide Park!)

crackers
08-10-2009, 09:44 AM
you've got me confused now doug.who am i married to ?:confused:
john.

Sangye
08-10-2009, 10:12 AM
I'm not sure, but I think you might be married to Doug.

crackers
08-10-2009, 11:14 AM
aaaaaaaahhhhhhhhhhhhhhhhhh:eek:
nothing personal doug.

Doug
08-10-2009, 02:03 PM
I tried to make a quick video explaining everything, but the English software is giving me fits. (We truly do speak different languages on opposite sides of the Atlantic!) The working title is "Birmingham is not Liverpool". I think it will be quite lovely once I figure out video conversions and a few other details I thought I'd mastered- or, at least, hadn't messed up so badly the end result wasn't viewable. Hmm. No, I'm still unmarried, unless I get the dogs, and I don't think that's happen:)ing!

coffeelover
08-12-2009, 12:08 PM
[QUOTE=unless I get the dogs, and I don't think that's happen:)ing![/QUOTE]

You had one on your couch Doug, remember? Maybe that counts for something

Doug
08-13-2009, 12:05 AM
I am lost now, though I remember the dog on couch incident...! (Where else would you expect to find one?):)

Sangye
08-13-2009, 12:15 AM
If you're at my house, UNDER THE BED!

Doug
08-13-2009, 12:17 AM
Yeah, whining and complaining about the noise "upstairs".:)

firecracker
08-18-2009, 08:36 AM
You definitely sound like you have the same symptoms I have had. One thing I just have to mention is about the Topomax. I have tried it myself and hated the way it made me feel in just four days but my main issue is I have two friends that were on it. One was on 100mg twice a day and got to the point that she could barely talk right, stuttering and losing train of thought. Muscle and joint pains so bad it was hard to walk or hold anything. Come to find out, my one friends doctor found out that Topomax was recently linked to brain damage. Both friends have stopped the topomax and one is almost normal and the other has been off it for a week and much improved. he was down to a cane for walking and is now not needing it. Two of us noticed we got more migraines from the pain medications. He takes for his failed back surgery. I take them for the sinus pain from the (maybe) wegeners. Although, as bad as the migraines are, they are worth it to get rid of the face pain I have off and on.. esp today..its really bad. Im not sure if you had migraines before the sinus issues as I did but if you just started getting migraines with the wegeners, a preventative such as Topomax most likely would not work for them anyway. Most of mine that are not the normal migraines are caused from breathing cold air at work since the destruction is really bad inside my nose. You can see down my throat through my nose and I can do some pretty good flashlight tricks by sticking one by my mouth which makes me light up like a pumpkin since i have so much missing in my head. probably not funny to some but i try to keep positive by making the best of things. I definitely had a lot of doctors misdiagnose me and maybe even still but please watch yourself with the topomax (or dope a max as my friend calls it). I hate to see someone get messed up from medications.

Doug
08-20-2009, 11:37 AM
PTSD « wegener'sgranulomatosis (http://patricebrown.wordpress.com/2008/08/02/ptsd/)

Here is a link to a really excellent resource I found today. It is especially complete, giving advice for everyone from the weggie involved to the neighbors. It goes into detail on dealing with doctors, how caregivers should deal with issues (burn-out, over doing it, etc.). I mean it is complete! There's information on drug trials. Take a look, see what you think.:) (You see some familiar names in it, so this site may have been recommended before! Nevermind, it is that worthwhile.)

jola57
08-22-2009, 12:42 PM
Interesting site Doug, but I noticed that even though they had a canadian vasculitis brochure the list of docs did not contain even one Canadian.

Doug
08-22-2009, 01:04 PM
Interesting site Doug, but I noticed that even though they had a canadian vasculitis brochure the list of docs did not contain even one Canadian.

Among you Canadians, there must be opinions on that subject. More to the point, if you look at the Wegener's Granulomatosis Support Group of Canada's "Initiatives" statement, they say: We are trying to build a database of all medical professionals who have at least one WG patient, and encourage any patient to submit the names of their physicians to be added to the database. What a wonderful opportunity for you in the North~!

http://www.wgsg.ca/ (http://www.wgsg.ca/)

jola57
08-22-2009, 01:09 PM
Ha, i wish I could help. I have a host of specialists but none of them Wegs specialists, even my rheumy. I think there must be someone in Vancouver but have yet to hear of him/her. Only one I know is the research doc in Toronto, but I don't think she actively treats many weggies

coffeelover
08-25-2009, 11:16 AM
Jolanta,

I kow this is not necesarily the place for this but may I ask what your avatar is? My eyes are not focusing evindentally?
coffeelover (in need of more or maybe less)

Sangye
08-25-2009, 11:50 AM
I can't tell either! I keep forgetting to ask. It looks like an astronaut walking away, holding a space helmet in the right hand. I am quite certain that's not what it is, though! :D

jola57
08-25-2009, 12:39 PM
Close, it is a wooden figure of a peasant doffing his hat of to guests at a Polish pub, but this small he does look like an astronaut

coffeelover
08-29-2009, 05:23 AM
thanks for the info. and......hats off to ya!