Split decision on diagnosis

Hello all, i was tested randomly by my brigade surgeon for many things because he didnt understand fully my wide array of symptoms. After 5 days of blood and urine samples he settled on granulomatosis with polyangiitis. I have also in the past been positive for G6PD and i do not know it that would have an effect on results. My lab results are as follows. One doctor said wegners, my rhumetogogist said maybe but we will re test in 8 weeks, and a patholigist my aunt knows said wegners no doubt. I am confused on why my rhumetogogist would not want to say yes and begin treatment. My symptoms are: constant runny nose on my right side, ulcer/zit like things inside my nose, difficulty breathing and i am in shape, and some aching joints, and weird heat flashes in my left foot and left thumb. My left armpit lymph node swelled up for a few days as well. Mind you i have a 2 year old and a wife who still have not got a " cold" from me in over 3 weeks.

Urine sample
RBC 3 cast cells

Serum
ANCA: <1:20
C ANCA: <1:20
Proteinase 3 ab: 4.7 (H)
Meyleoperoxidase ab: <9.0
Neutrophil cytoplasmic ab: <1:20

Neuclear ab: negative

From what ive read, and i know i am not a doctor, the tests dont all have to be positive to have wegners. And we did find this on accident so i think i was not showing symptoms when i saw the doc the first time.

Hi Aaron,
I have read many times people have a difficult time getting the correct diagnosis with this disease. My best advice to you is to go to a Wegeners specialist. The vasculitis site has a list of names. Also, if you tell us your location, others on this site will share where and who they see. I am in the Carolinas and I go to Duke.
Masha

Welcome to the forum, Aaron,

Lack of G6PD is not related to WG. My father and my 2 sons have it. They don't have WG. However, there are some medicines which you are not allowed to take, one of them - bactrim/ sulfa - is used among many of us. Remember to mention your G6PD to your docs.

You mentioned pathologist ? Did you have any biopsy taken ? Labs and symptoms are not as conclusive as a positive biopsy.

Like Masha said, the best is to see a WG specialist.

I have not had any biopsy. The patholigist was a friend of my aunt in colorado. My issue is my rhumetogogist is not on the same conscensus as the other 2 doctors.

Quote:

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Originally Posted by Aaronwelch015

I have not had any biopsy. The patholigist was a friend of my aunt in colorado. My issue is my rhumetogogist is not on the same conscensus as the other 2 doctors.

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You might want to ask your docs how many wegs patients they are treating. If the number is low double digits, please look at the Vasculitis Foundation's website (find a doctor) and see if you can get a consultation or referral.

I live near Columbus, Ohio, and you'd think there would be good vasculitis expertise at Ohio State's medical center. Not the case. I drive 2.5 hours each way to Cleveland Clinic (and I'm fortunate that it's that close).

If you don't have kidney involvement, try Methotrexate pills and an initial high doses of steroids.
If you have Wegs, in 3 days your symptoms will subside, in a week you'll be "fine."
Yes, get a Wegs specialist. Most regular doctors are clueless and can be harmful to our health.

Aaron,
I concur with everyone here encouraging you to seek a second opinion from someone whom has experience with GPA. I would also encourage you to see an ENT with experience in this disease. I hope you get some comfort soon!
Natty


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