Hello, new to the forum.

[shegothipslikecinderella]

Hi- I'm Jasmine, I've just been diagnosed with WG. I have not got everything in line yet- haven't started treatment, don't have any good doctors, don't know up or down..... I'm really quite lost and in a lot of pain.
Previously I've been quite healthy, except for the genetic disorder von Willebrands, which has not interrupted normal life except for frequent nosebleeds and a general avoidance of surgery.
I have been married for 5 years and my husband and I have 2 children, Gabriel who is 3 and Violet who is almost 2. I'm a stay at home mom, a freelance writer, and up until I became ill, I was training to become a midwife. I like music (mostly punk), reading (sci-fi and comics sparked my love of books in general) and art, all the arts.
I am going to start searching around the forum, I am sure like any forum there is a lot of info to be found.
Any advice is welcomed on how to procure a decent doctor and where to find more information on well, everything.
Nice to "meet" you, I hope to get to know you better soon.
-Jasmine Rae

[coffeelover]

Jasmine,

I am so glad you found this sight. There are many people on here that can give you great advice. I am not sure how you were diagnosed, but I know people on this sight will tell you to find a doctor as soon as possible and one that can help you with a WEgs diagnosis.

Also you could check out the vasculitis foundations website for some references of places near you.

We are with you all the way. Just ask
Lisa Coffeelover

[shegothipslikecinderella]

Thank you, I'm glad as well. I was diagnosed by a rheumatologist who I was referred to by an urgent care doctor... I was never much of a doctor person, so finding a good one is hard for me. I've made appointments all around town, I have all my medical records too, the x-ray, urinalysis stuff, CT scan, etc. I am hoping to find a team within 2 weeks. In the meantime I have specialists I am seeing that the rheumatologist reffered me to, I don't like them, but they will have to do for now.

[Doug]

Perhaps Lisa can share her knowledge of doctors she's been going to (if she feels confident in them...) as a starter. Also, you are in the Land 'o Mayo, certainly a well known and respectable source of information on WG, but go first to the one Lisa mentioned, the Vasculitis Foundation.

Take some time to go through this site, just to read what others have gone through, what forum members wrote about their experiences with WG, and added to the general knowledge you need to have to deal with doctors, nurses, family, friends. There are other web sites posted throughout the forum that should be of help to you, too.

Like Lisa, I am glad you found this forum. The people have a very broad experience with the disease on whole, so there doubtless will be one or two who've experienced WG similarly to you. I hope so, at least. I didn't have any contacts with other Weggies until well after the critical part of my treatment was over. A couple of nurses and my boss at the time copied a little information off of the internet, and that was helpful, but not as complete as I needed, I now know.

Speaking of "need to know", the Vasculitis Foundation web site has a "Frequently Asked Questions" section directed at patients. I thought it was an excellent basic indoctrination for new patients. There's another on somewhere on this web site that I never can find, though it surely is right in open somewhere. It was put out by the St. James Hospital in Dublin (I think that's the hospital). It, too is an excellent guide. Perhaps Andrew can add a note to guide you (and me!) to it.

I also welcome you to the forum!

(p.s. pay particular attention to the comments about Prednisone and its effects on your weight, activity level)

[andrew]

Hi Jasmine, welcome! Sorry that you're having issues finding doctors. As Doug said, you're in the same state as the Mayo Clinic (Mayo Clinic medical information and tools for healthy living - MayoClinic.com). Others here can recommend which of the docs there are the best. I hear a lot about Mayo and the great docs there.

Check in this thread for some links: http://www.wegeners-granulomatosis.c...resources.html

Here's what Doug is talking about I think: http://www.vasculitis.org/download/WG.pdf

[Sangye]

Hi Jasmine,
Happy to meet you. (Love your screen name!) I'm a chiropractor who specialized in pregnancy and pediatrics before I got sick. I worked with excellent midwives. I hope you can heal up and get back to that great profession.

I strongly encourage you to go to Mayo in Rochester ASAP. They specialize in Wegs, and you need that. Wegs is dangerous enough, but with VWD, if your lungs began to hemorrhage, it would be far more dangerous (not to mention difficult for a local doc to treat).

I went to Mayo in Arizona, and the procedures at the other locations seem to be the same, so I can help you if you like. (Arizona Mayo didn't specialize in Wegs, so now I go to Johns Hopkins in Baltimore.)

Call them and say you have Wegs but haven't started treatment, you have no good docs, you have VWD, and you have toddlers. They'll assign you a Wegs specialist and get you in faster. If the appt is too far out, keep calling back daily (twice is okay) to ask about cancellations. They don't mind and there are many cancellations, since people come from around the world.

You are unfortunate to have Wegs but fortunate beyond belief to live so close to one of the best places on earth to treat Wegs.

[shegothipslikecinderella]

I am going to call the Mayo myself for sure- my husband did yesterday, I guess, but he forgot the vWD and stuff... I have friends in Rochester who I am visiting over the July 4th holiday, so I will definitely impose myself on the Mayo. It is a bit of a hike to Rochester, this coming from a Minneapolis-ite who is used to walking a block at the most to anywhere, lol. Definitely worth every mile though.
I hope I can get back to pursuing my career in midwifery, it is my passion. We midwives love the chiropractors, almost always the first answers to pregnancy complaints are, How's your nutrition? and Are you seeing a good chiropractor?
I did see an ophthalmologist today who seemed very knowledgeable and was exceedingly nice, which was a pleasant change of pace.
Oh- and the screen name is sort of my tag everywhere- I was well known in the childbirth advocacy ring because of it. It is a line from a Pixies song that I adopted during an 'empowering myself' phase. I am sure some interesting things pop up when you google it. lol.

[Sangye]

(We chiropractors love the midwives, too! Happy moms, dads and babies. My practice was in northern Arizona--perfect location for a cozy, family-based practice. It'll be pretty different to start up here in the suburbs of D.C.... Chiropractic out here has a poor reputation. I've only met a couple chiros here, and I'm sorry to say that they earned that bad reputation. )

Very glad to hear you're heading for Rochester! Don't sweat the distance-- your life and quality of life depends on having the best docs.

One thing you'll quickly learn about Wegs is that the Wegs specialists are much more skilled in using less toxic treatments and sorting out Wegs from collateral damage. Collateral damage can look exactly like active Wegs. Less experienced docs will often treat every symptom like Wegs, and you can wind up on the harsher drugs for longer periods. I've also noticed the Wegs docs are less likely to poo-poo my symptoms.

When I had non-Wegs docs, I had to stay on top of them to make sure they knew everything and didn't ignore or harm me. With the Wegs docs, I don't have to do that. They're always thinking 10 steps ahead of me. My attempts at micro-managing are *sigh* foiled again.

[Doug]

Hi Jasmine, welcome! Sorry that you're having issues finding doctors. As Doug said, you're in the same state as the Mayo Clinic (Mayo Clinic medical information and tools for healthy living - MayoClinic.com). Others here can recommend which of the docs there are the best. I hear a lot about Mayo and the great docs there.

Check in this thread for some links: http://www.wegeners-granulomatosis.c...resources.html

Here's what Doug is talking about I think: http://www.vasculitis.org/download/WG.pdf

Yes, that's the one! I printed it out once and read it. Excellent information in it!

[coffeelover]

Jasmine,

I did not realize you were from Minneapolis area. We are only about 60 miles away from each other!
I see a rheumatologist who is quite schooled in WEGs, but she is not necessarily a WEGs specialist. Her name is Carolyn Bowles and she has her practice in Saint Peter, which is only about 60 miles from Minneapolis, as I already stated.
If you are worried about Rochester, maybe after you get your appt set up I could meet you there and walk through the process with you. I have family in the area and wouldn't mind the trip. I do not intend to access the Wegs specialists in Rochester Mayo as of now. I feel my rheumy has my disease under control for now. I am sure if things get worse over time, I will venture to Rochester for further treatment. My sister works as a research asst in Rochester and she has some pull if needed. Just let me know. We want you to get help asap. If you are interested in talking with my rheumy, I can help with that too. Just ask!
Lisa Coffeelover