Hello from Wyoming

[RangersWife]

My name is Angie and I was diagnosed in March 2012. There are no others with vasculitis in my area so I'm always excited to find groups like this.

My story began with sore hands on January 3, 2012. Two weeks later I couldn't move without horrible pain. I made an appointment with a new doctor in our town of 6000 who had room on her schedule for a new patient. She told me that this certainly wasn't the worst flu of my life which was my self diagnosis. I went to the hospital for 25 blood tests that were negative and later for 12 more. It looked like Wegener's but she wasn't sure. She sent me to a rheumy in Billings. It was a 3 month wait and I was feeling worse and worse so my husband and I took it upon ourselves to find a different doctor. I called Cleveland Clinic on February 15 and on February 17 I was sitting in the waiting room at Cleveland Clinic after a long airplane ride. March 27th it was confirmed that I probably had Wegener's. I feel great now. I take my MTX every Saturday and rarely feel any more than joint pain. I feel very blessed to have found a young doctor in the middle of Wyoming who worked hard to find an answer to me.

I look forward to learning more about Wegener's from others with the same disease.

[Dirty Don]

Welcome to the best little WG blog in the world Angie! Easy to say...we're one of the few and the best! You will find all kinds of info, experiences, great people, and a common willingness to deal with this absurd little disease we all seem to share! Sorry, just venting...back to you! Seriously, you are very lucky for that one doc in Wyoming...more docs should be as proactive as he was for you. Glad you got to Cleveland Clinic...Mayo may be closer for you if you're interested. Phil, aka Batman, knows many docs of WG all over the place so ask him for a recommendation (if you don't have one already) to a WG experienced doc. If you have any questions, ideas, info, rants, etc. - please feel free to let them go on here...someone is always on from somewhere in the world and will answer soon. Glad you've got a handle on the WG - hang tough, keep strong, be patient...it's a long road for us all. Best to you.

[pberggren1]

Welcome Rangerswife. You can't do much better than the Cleveland Clinic for a top Wegs doc. Keep your doc at CC, this is of utmost importance.

Do you live fairly close to Billings? I was in Helena in August and got to meet vdub and his wife.

[annekat]

Welcome, Angie. It is encouraging to know that someone in what sounds like a fairly remote area can end up getting good care for Wegeners. I'm also glad you were able to get it diagnosed fairly soon without it smoldering for years in the form of recurrent sinus and other problems, as was the case with quite a few of us. Sounds like your doc in Wyoming was really on the ball, and let's hope that many more like her are graduating from medical school every year and moving to the places that really need them the most. It's great that you were able to get into the Cleveland Clinic. There are not many centers of specialization in vasculitis, and that one seems to have the best reputation, though there are other excellent ones talked about on here, as well.

As everyone says, you have come to the right place to get info, make friends, ask questions, vent and rant, tell stories, and whatever. This is really an excellent group of people who happen to have Wegeners and can be your greatest resource. I hope you will check in here daily, as many of us do, and keep us updated on a regular basis!

[Pete]

Welcome to the forum. I'm glad to see you're being treated at Cleveland Clinic. That's quite a trip to get there. I hope they can find a way for you to get high quality care closer to home, though.

I also go to Cleveland Clinic to see Dr Villa Forte, but my drive is just over two hours each way.

Good luck and better health!

[RangersWife]

We are about 1.5 hours south of Billings but we've been to Helena, it's beautiful
. I'm currently changing from my doctor in Cleveland which is a 27 hour drive or $1000 plane trip. The new doctor trained in the same program, but a year after, my doctor in Cleveland. He's in St. Lake City which is an 8 hour drive and much easier on my body and wallet.

[annekat]

I was going to mention Dr. Koening at U of Utah but have not seen him myself. I know there at least 2 or 3 on here who've seen him and think very highly of him. I'm happy there is such a place in the western half of the US. It would be quite a drive for me, too, though.

[pberggren1]

Excellent!! Good to hear you are going to have Koening as your main doc. He is very good and well liked my many fellow Weggies.

[Girly3800]

My husband was diagnosed with Wegener's in April 2012 - we are Southwest Wyoming. His rheumatologist is in Salt Lake although not Dr. Koenig. We are very happy with his care and treatment though. There are a few others in Wyoming that we have heard of - a couple here in Sweetwater County and a couple in Laramie.

In my husband's case it was a visiting dermatologist from Casper that got us the definitive diagnosis. He happened to have taken biopsies of the vasculitis before all the other doctors started pumping my husband full of drugs they were using trying to treat all of the various symptoms that distorted the lab results. Of course here in the middle of nowhere it took 10 days for the biopsy results to come back. Once the ANCA test came back along with the biopsy results we had a name for the disease and a course of treatment defined.

After a pretty miserable year my husband is doing well. He is on MTX and some prednisone now. Trying to get from 7.5 pred a day down to 5. His doctor is pretty confident in our ability to judge when and how much to lower the dosage and we are proceeding very slowly.

Wish you well.

[pberggren1]

Are you Gals familiar with Cody, Wyoming?

[pberggren1]

Girly3800, what did your husband have biopsied? Was it something on his skin?

[Girly3800]

Phil - he had vasculitis lesions on his extremeties - legs and arms. The dermatologist did biopsies on two of the lesions on his legs. He was pretty sure it was vasculitis just didn't know what variety. Those biopsies turned out to be the most important information we ultimately gained. My husband also had a nasty lesion on the roof of his mouth. The balance of his symptoms were migrating arthritis and water retention. We were bouncing around doctors looking for someone that could help. Between the medication for high blood pressure, antibiotics to clear the mouth lesion, diuretics for the water retention and prednisone for the lesion the blood tests were skewed. He was fortunate and there was no no sinus or lung involvement. There was kidney involvement.

Once he got into the hospital under the rheumatologist's care additional biopsies were taken since the results from the first weren't available yet. The second set of biopsies were inconclusive. ANCA testing came back positive for Wegener's so the doctor started him on cytoxan and prednisone. A few days later the first biopsy results came in and confirmed that it was vasculitis consistent with Wegeners.

[Girly3800]

I've been through there a few times.

[pberggren1]

WOW! That has to be rare for Wegs to just mostly present at onset with just skin lesions, mouth sore, arthritis and water retention. He was blessed that the biopsy and ANCA both came back conclusive for Wegs.

[annekat]

WOW! That has to be rare for Wegs to just mostly present at onset with just skin lesions, mouth sore, arthritis and water retention. He was blessed that the biopsy and ANCA both came back conclusive for Wegs. It's also very impressive that a dermatologist was the one who thought to do the tests and got the diagnosis. Sounds like there are some pretty sharp doctors in Wyoming. I also like the idea that they travel to other parts of the state to see patients.

[Girly3800]

it is rare - but he hasn't done anything with this disease according "to the books".