Newbie looking for direction

[Chris L]

Hello all,
I am a new member looking for advise.

I was diagnosed just three days ago and I have no idea what to think. My family is not taking it well. Somehow in my readings I found the forum and I see a wealth of information and caring between each other. I look forward to being a part of this group.

My specifics are quite basic at this point. Sinus trouble the last 4 years. Deviated septum repair three years ago and then again three weeks ago. Path on most recent surgery showed Staph in the left nostril but the reoccurrence of the deviation didn't sit well with my ENT. He ordered blood tests and revealed that my ANCA levels were high. Kidney function is fine with no lung issues.

I have been referred to a Rhumy at the University of Miami.

My question is:

Based on experience of the group. Should I waste time with the Miami doctor or head right to the people who deal with this every day?

I have good insurance and the Mayo Clinic in MN is in my network even though I live in FL

Who is the best doctor to see?

Money is not an issue. My family wants me to come out full force and get ahead of this.

Please help guide a newbie.

thank you for any advice.

[drz]

Go to Mayo Clinic web site and make an appointment to see any of the vasculitis experts listed for Mayo. After an initial consultation they can advise a local doctor on appropriate treatment for your case and the lab work needed to monitor your case can probably be done locally and faxed to Mayo as needed.

You are lucky to get diagnosed before more damage to a major organ like lungs and kidneys. Getting the correct treatment early should greatly improve your chances of avoiding any such damage and also provide much peace of mind to you and your family. Mayo will want copies of local records sent once the appointment is scheduled so they have them at first appointment. Your description sounds like you might get by with an annual consultation.

[pberggren1]

Mayo for sure. But if your insurance covers UNC or JHU, go to those as well, they are closer. But it is your choice.

[Dirty Don]

Based on experience of the group. Should I waste time with the Miami doctor or head right to the people who deal with this every day?
-If you have the time and money, go to a WG specialist. If not, see if your rheumy will consult with a WG specialist.

I have good insurance and the Mayo Clinic in MN is in my network even though I live in FL
-Mayo is also in Jacksonville with WG as a specialty.


Who is the best doctor to see?
-One you trust, can talk with, tells the clear truth of the matter, and should be experienced with WG or at least AI diseases in general.

Money is not an issue. My family wants me to come out full force and get ahead of this.
-Good on you...it'll take more than money (my insurance paid out near a half mil on my 'flare' and subsequent crash - but it was my wife, a great team of docs, and Mayo who pulled me thru it all - I was lucky, should be dead by all accounts!)...a good attitude, patience, assertive behavior, and a strong understanding support system.

[mishb]

Welcome to the Group, Chris. I'm glad you found us so quickly.

Just as the others have said, get to see one of the specialists as soon as possible.

Keep reading through the posts on here which will give you a wealth of information, not only about which doctor to see, but about everything from treatments, medications, etc.

Good luck and we look forward to hearing more as you progress through to remission.

[Debbie C]

Hi Chris and unfortunately welcome to our crazy group. Like everyone said..absolutely get a specialist.There is another person here ( Rocco) also from Miami maybe he will see this and give you some pointers on who he sees...Good luck and keep us posted.

[Alysia]

Hi Chris.
I only want to echo what others wrote, and to welcome you
it is a good place to be in. people here are amazing. not only with knowledge but also with warm and supportive attitude, and great sense of humor...
It seems that you "catch" it early enough to beat it soon. good luck!

[Chris L]

Thank you all for your replies. I send a request for appointment to Mayo in Jacksonville asking for a specialist.

I've spent quite a bit of time reading posts. Some bad experiences but mostly it looks like people make due with their situation and live on. I feel very naive at this point. I have no idea what to expect. I am an impatient person. I want answers as soon as possible. just like the military I guess. Hurry up and wait.


For now I will see if i can get to a specialist and I will post what I find out.


Thanks again all.

[annekat]

I can't add much to what the others say above, but just want to say welcome to the group! It sounds like you are on the right track, and lucky that Wegs has not progressed any further than your sinuses and nasal area. I look forward to hearing how things go! This is a great forum and I would be lost without it.

[Mizamonie]

Hi Chris. This is my first post. My husband was diagnosed last year. We too live in S. Fl. Broward county. The journey ahead will be trying but more manageable with a supportive family. First get yourself a really good rheumatologist. My husband was inpatient at U of Miami last summer under the care of a dermatologist because his symptoms were horrendous skin lesions. We finally have a diagnosis of pyoderma maligna Limited Wegeners. Dr. Carlos Nousari diagnosed my husband but will only co-manage my husband's case with a local Rheumatologist, Dr. Valenzuela (in Plantation). He is supposed to be excellent but perhaps not the best bedside manner. I am happy to share any information I have with you.