Hello from Canada

[Dunseith]

howdy. i guess i'm the new kid on the block. here's my story.

my name is chris dunseith, i'm 38 years old from near toronto and i was diagnosed june 29th of this year at st. mikes hospital in toronto.
looking back over the past 6 months, i guess i've had a lot of symptoms that were classics but nobody put 2 and 2 together until i was crashing at the end of june. here's the list that a lot of people on this forum have experienced. acute sinusitis since last xmas...blood in the urine...crazy bad joint pains in the knees, feet, hands...bells palsy...hearing loss in the right ear...mouth/taste bud changes...and finally complete kidney shut down. i was one sick dude. luckily a local emergency room doctor recognized the signs and rushed me to the team at st. mikes in downtown toronto who have dealt with wegeners/vasculittis quite a bit and knew what to do with me right away.
in the past month i've improved every day and am home with my family. my dialysis stint has been removed and i'm following my steroid/cyclo schedule.

its been quite the ride for sure. i'm glad to find a support group to chat with and steal info from.

any suggestions for the beginning stages of treatment? dealing with the dry-mouth...honestly. what a pain.
anywho...stay healthy.
Chris.

[Dirty Don]

Welcome Chris...sorry you had to find us, glad you did. You will find all kinds of info on here, mostly experiential, some technical, and all valuable. You most certainly bought a WGs ticket sure as shooting! Please ask any and all questions, share your experiences...or sometimes just vent! Best of luck to you.

[Debbie C]

Hi Chris,glad you found our group. You sure have been thru most already.Glad you are off dialysis.This disease seems to effect everyone in a different way but it sounds like you have some good drs. that are keeping on top of things.As for the dry mouth, I drink alot of water but just recently ,I have been putting a little bit of lemon juice in it.It quinches my thirst alot more. Good luck and keep us posted,if you have any questions or want to vent we are always here

[annekat]

Welcome, Chris! There are several other new kids on the block right now, so you are not alone! Wegener's is supposed to be such a rare disease, but it seems we have new members joining the forum all the time who were just diagnosed recently. What you went through pre and post diagnosis sounds so much like me except for the kidney involvement. I was lucky there, but did have lung involvement in addition to the sinus, ear, and joint problems. More docs should be learning to put two and two together when presented with the sinus and ear stuff along with the joint stuff, especially in people who don't quite seem old enough for arthritis yet, but really, for anyone with unusual joint pain that comes on suddenly. Kudos to that ER doc; there should be more like him or her!

Anyway, I'm glad you found us, and you will find this an indispensable source of info and support for anyone with Wegs. I have said many times that I don't know what I would do without this forum. I would really be in the dark.

[me2]

Welcome Chris. A product called Biotene helps with dry mouth a lot.

[drz]

Your tale sounds only too familiar. Glad they figured it out before it was too late for you. I found sucking on sugar free lemon candy helped some with dry mouth. There is also an over the counter med you can get for dry mouth but I never used it much but it helped some.

With treatment my kidneys recovered enough so I didn't end up needing dialysis and hope you too are as lucky.

Welcome to our group. The admission cost is high but this is a pretty special group of nice supportive people so glad you can join us now that you need to be here.

[Alysia]

Hi Chris,
welcome to the forum.
for me, being here changed completly my handling and my experience of having WG, from a state of desperate loneliness and fears, to a state of being supported and having knowledge that changed my treatment for good.
this forum is the best "wg doc" you can find.
I believe you can get here all the info and support you need.
I wish you quick recovery and getting into remision.

[DJS]

Chris, welcome to the group, such a sad story but typical. Look at it from the good side, at least you didn't need a kidney transplant by the time they figured it out.
You asked about a sore mouth, or dry mouth. My wife asked her dentist if there was anything and her perscribed a mouth wash called
Dexamethasone that she could use at bedtime. You will see that many types of Doctors will be involved.