New to forum from Indianapolis

[Patrick-J]

Hello! I'm so glad to have found this support group!

A little bit about me. I've been diagnosed with WG for about 16 months now, but suffered with the sinus and respiratory symptoms for years before stumbling on an infectious disease specialist that sent me to a rheumatologist thinking I had another inflammatory condition. Had been to 2 ENTs, a pulmonologist, and 2 infectious disease doctors. Luckily, I've not had kidney complications.

The doctor treating me now made the diagnoses based on ANCA results, without a biopsy (wishing I had some biopsy results now). I responded well to prednisone, methotrexate, and trimethoprim/sulfamethoxazole (a.k.a., Bactrim, Spetra, SMZ-TMP). I've not tolerating the prednisone well. Insomnia, poor concentration, and crazy ideas going through my head were the worst. Being hungry all the time hasn't been good for my waistline either.

We've tried to wean me off the prednisone, but I think that has triggered a flare. I'm back to having sinus inflammation (in one particular spot I'm conscious of in the middle of my left cheek), "unusual" drainage from my nose, and increasing shortness of breath.

I've decided to take this opportunity to go see a specialist in WG at the Cleveland Clinic. I'm the first WG patient my doctor, who I'm generally happy with, has treated.

Anyway, I'm glad to be here and have learned a lot already from ready the stories posted in the forum. I have a lot of hope about living as normal a life as possible.

Best to all,
Patrick

[JanW]

Welcome to the forum Patrick. Good news about going to CC -- you definitely don't want to be the first WG patient that anyone has treated, although, of course, everyone has to start somewhere!

Hopefully, with the right immunosuppressant and the right dosage, you may be able to minimize your use of prednisone, which is very important for your long term health.

[Sangye]

Hi Patrick, so happy to have you in the group! I agree with what Jan said and look forward to seeing your posts.

[elephant]

Welcome Patrick, I go to the Cleveland Clinic too and you will not be disappointed. I too agree with Jan!

[Patrick-J]

Sounds like I made a good call going to Cleveland Clinic.

JanW - When you started at CC, did they repeat all of your X-rays and lab tests? I'm having trouble tracking down all of my records.

Thanks for any and all advice you folks want to share.

[JanW]

Hi, Patrick - I don't go to CC, I go to the Hospital For Special Surgery since I live right outside of NY, and am very fortunate to have a great doctor there.

I'm sure someone else will be able to chime in on this -- we have many members here, including elephant, who go to that hospital.

[Brooke]

Welcome Patrick - Sounds like CC is a great place to go! Glad you are able to go there.

[Palmyra]

"- When you started at CC, did they repeat all of your X-rays and lab tests? I'm having trouble tracking down all of my records."

Hi Patrick J! My daughter goes to the Mayo Clinic. I assume the big centers are similar in what tests they want, and what tests they may wish to repeat once you get there. A phone call to the specialist you are seeing would be a place to start. A nurse usually follows up and can be specific regarding what materials would be helpful, and how to get it there.

Mayo asks that you bring it all with you (no mailing in advance or faxing,) as that way they don't have to keep up with it. It really does make things more efficient.

Very important note....you may be in for LOTS of tests in the future, and they will be from a variety of specialists. They don't 'talk' to each other very well, and certainly won't transfer all your data back and forth.

You should organize and keep all results for yourself, starting right now. Go get a big 3 ring binder, start with a few section dividers, and every time you have a test of any kind, ask for a duplicate for your own personal record. If you get it at 'time of' it is always there for you to refer to in the future. Nobody else will do this for you, so you have to be your own advocate as far as records go.

Also, CT scans are radiation, and your cummulative dose will add up quickly. Ask for copies at the time of testing, and find out what format is needed to be read by your docs....Mayo needs CT's in a diacom format. We keep copies of CT's in 'The Folder' as well as all other labs. After several years, you will be looking to minimize your radiation exposure.

Good luck!

[Sangye]

Excellent advice, Palmyra!

Each center is different. When JHU sees new patients in the Vasculitis Center, they want all the records sent to them ahead of time. They take about a week to review it all. The purpose is to decide if their center is the right place to be, and if so, to thoroughly familiarize themselves with your history. At my first visit, Dr Seo knew my very complicated history inside and out. He had gone through all my records with a fine tooth comb and had so many things underlined with comments in the margin. And, he had the whole thing memorized.

The VF docs are incredible, every one of them. You're in great hands at CC, Patrick.

[Palmyra]

And, he had the whole thing memorized.

The VF docs are incredible, every one of them. You're in great hands at CC, Patrick. [/QUOTE]


Oh, I wish I had that kind of brain!!!!