Split decision on diagnosis

[Aaronwelch015]

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.

[Masha]

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

[Alysia]

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.

[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.

[Pete]

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.

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).

[seied]

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.

[NatriceRomeo]

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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