Newly Diagnosed

[rosies mom]

Good Morning. Just got signed up on this forum and thought I would introduce myself. I was just tentatively diagnosed with Wegners less than a week ago. Still trying to let it sink in. It seems so strange to me that life goes on a such a pace for such a long time and then all of a sudden it can get totally stopped in one instance. I work as a medical assistant in a doctor's office so I have been there were people get unwelcome news from there doctor. Really haven't ever been there myself until now. So at this point I am just trying to figure out what to do next. I really want to go back to work, I may have failed to mention that I unfortunately wasn't diagnosed until I ended up with ulcerations on one leg that a first were totally blamed on a diabetes , which is under control. So at this point I sit at home waiting for other people to decide my fate. Not really sure what to say. Just one question, does anybody know a good doctor in the Seattle area? As I said in the first part of this, this is tentative the doctor is still researching it. But all the blood work points to Wegeners.

[renidrag]

Good Morning Rosies mom, sorry you had the need to find this forum however it is the best concerning WG. Being from Boston I don't have Doctor information is Seattle. I do know there are others here from your area and I am sure you will hear from them soon. I do know the doc you choose should be a specialist or at least willing to take direction from the Vasculitis Foundation. Good luck to you
Dale

[Pete]

Hi Rosie's Mom,

Welcome to our forum where we weggies share our experiences. I'm sure Annekat, a forum member from Olympia will be checking in at some point today. She will be able to steer you toward specialists in your area.

[MaxD]

Do take a look at vasculitisfoundation.org for a list of specialists in this disease. Several folks on this board (including myself) have found it valuable to consult with a specialist and have our local rheumatologist work with the specialist. As you know, it's a rare disease and I imagine many doctors go through entire careers without seeing/diagnosing one of us. While you're at home reading up about the disease, don't let all the horrible possibilities scare you - I've found that visiting this forum, asking questions, and reading about others' experiences has given me strength and patience.

Good luck!

[kaysee]

Welcome Rosies Mom,
I have a wonderful dr but unforunately we are in TEXAS. There are others on here from your area. Hope they steer you to the right dr. It is very important to find a dr who knows WG.

[Alias]

If you have not seen a rheumatologist yet, you might want to check out those available at Virginia Mason Clinic. My experience there was very good.

[annekat]

Welcome, Rosie's mom! I'm sure Alaskatom's recommendation is a good one, and there are others in the Seattle area. I don't go that far from home for treatment, but probably should. Another place to look is at the UW Rheumatology Clinic. One of our members, me2, has a team of docs there he seems quite happy with, and he's had WG for a very long time. There is a Facebook group called Vasculitis: Northwest Washington State. You might check that out, as a variety of docs at different facilities have been recommended there by members of the group. If you join, you can ask their advice. If the doc you are seeing now is not a specialist in WG, he or she may be able to get you started on treatment and may be aware of the docs in Seattle you should be seeing for more specialized care. And here is a list of known specialists who are willing to provide consultation services: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/)

We all remember how it felt to first get diagnosed. Pretty scary. Talking to others who have been through it makes a huge difference, and remember that with treatment, there is a lot of hope for recovery and getting back to a somewhat normal life. Let us know how this works out, when they officially dx you, and all that. Meanwhile, continue to ask questions, join in discussions, and use the search function to see past threads on various subjects. Best wishes, and send me a private message if you should feel the need!

[rosies mom]

Thanks for the warm welcome. I have been hitting the phones hot and heavy today calling doctors to try to get an appointment. It sure is a one long wait soonest 6 weeks most are 8-12 weeks. Which is a slight problem since I have about 7 days of paid leave left and then I am done. I know my boss is not going to let me go but I won't be getting paid. That's why I am in kind of a hurry. Again thanks to everyone who has responded.

[annekat]

Thanks for the warm welcome. I have been hitting the phones hot and heavy today calling doctors to try to get an appointment. It sure is a one long wait soonest 6 weeks most are 8-12 weeks. Which is a slight problem since I have about 7 days of paid leave left and then I am done. I know my boss is not going to let me go but I won't be getting paid. That's why I am in kind of a hurry. Again thanks to everyone who has responded.

You mentioned you are being seen by a doc who is investigating whether it is Wegener's. Once that is found out, you need to start treatment with an immunosuppressant, in addition to the prednisone, ASAP. It doesn't have to be a WG specialist or a rheumatologist to prescribe meds that will start helping you right away. Any doc should be able to find out the meds to prescribe that will quickly get you on the path to recovery. There is time later to change course, use different meds, etc. And I would keep calling to ask about possible cancellations at those places with long waiting times. I've heard of people doing that and getting in much earlier.

Above all, don't panic, work with your current doc and get what answers you can. If you have to take unpaid days off work in the future, it is better than doing without the treatment and periodic monitoring by specialists that you'll ultimately need. Good luck!

[drz]

Thanks for the warm welcome. I have been hitting the phones hot and heavy today calling doctors to try to get an appointment. It sure is a one long wait soonest 6 weeks most are 8-12 weeks. Which is a slight problem since I have about 7 days of paid leave left and then I am done. I know my boss is not going to let me go but I won't be getting paid. That's why I am in kind of a hurry. Again thanks to everyone who has responded.

It seems you can often get seem quicker at one of the big specialty clinics like Mayo and then have them help you find a local doctor to follow up with your treatment. That way you know you are at least trying to find the best expert you can for your disease. They also allow a self referral but it helps with your evaluation if your doctor assists you with providing the info requested.

I remember once I had a problem following ear surgery and the local ENT was too busy to see me. I called Mayo and they said can you make it in this afternoon and they did see me the next day.

[vdub]

Ask your PCP to intervene and get the appt for you. That's what happened when I was dx'ed and my PCP had me in with a rheumy the next day.

Our son was treated at both UW and Virgin Mason for juvenile diabetes. We were happy with both.....

[annekat]

Ask your PCP to intervene and get the appt for you. That's what happened when I was dx'ed and my PCP had me in with a rheumy the next day.

Our son was treated at both UW and Virgin Mason for juvenile diabetes. We were happy with both..... That would make sense. Before I knew I had WG, I had a severe antibiotic-resistant ear infection in both ears. I ended up seeing a doc who referred me to a local ENT and I think I was able to get an appointment within a week, a lot sooner than if I had just called up and made an appointment myself. So you might try that approach, either go to the ER or get your doc to refer you as an emergency case. BTW, I've heard the ER at UW is pretty good, and the docs you'd need would be right in the same hospital. Just one idea, and I don't know if that's how it works in all cases.

[Jaha]

Welcome to the forum and best wishes to you in getting the proper doctor and tx.