Multiple Diagnosis, Wegener's, ANCA Associated Vasculitis, Still's Disease + More

[Sangye]

I hope I'm not taking too much of your time and energy with my questions--please tell me if I am!

On what basis did they make the diagnosis of Wegs? It's generally a combination of symptoms, diagnostic imaging (eg lung CT showing nodules), a (+) ANCA test, and (+) biopsy.

Has she had years of difficulty breathing? The lung scarring suggests that, since it doesn't develop overnight. (Basically the report says she has scarring at the top of both lungs, an increased number of lymph nodes in parts of her abdomen, and she isn't getting enough air into the deepest parts of her lungs.)

[ScreaminMeanie]

Amysmom, what a rough road your daughter is traveling. I sincerely hope you get some answers and get her on the path to a successful treatment ASAP. We appreciate you taking the time to answer all our questions, and hope that we can be of some assistance to you and Amy.

[LisaMarie]

Sorry to hear about your daughter...i am a new weggie too.....been dx almost a year....hospitalized this fall for resp failure...but now finally have a clean CT of my lungs......going to Mayo in February in MN ...praying for answers and coordination of treatment.....i have tracheal stenosis, sinus involvement, r hearing lost,r mandible lesion and salviary gland on right side involvement...and Lord Knows what else.....so just take it one day at a time and tell her to keep her chin up....this is where we come to vent rant rave and support and of course try to make light of ourselves too

[amysmom]

I'm not real sure exactly what the Doctor based the diagnosis of Wegener's on. She is (+)ANCA, has had severe sinus problems for years, shortness of breath with minimal exertion, crusting in her nose(what causes that anyway?) reoccurring kidney infections. The Doctors are great to spend time explaining things and answering questions but there is just never enough time.
I appreciate your concern and hope that you will continue to share your knowledge with me. I feel that I must learn & understand this in order to help my Amy.

[Sangye]

I suggest you ask them specifically how they diagnosed the Wegs. Those findings alone are not sufficient. Kidney infections are not an indication of Wegs kidney involvement, though they can occur with Wegs. They should see changes in the kidneys that are characteristic of Wegs. Her shortness of breath could certainly be caused by the scarring in her lungs. As to what caused the scarring...could be Wegs, but they need to demonstrate that. (Usually they see nodules/granulomas or bleeding in the lungs on x-ray and/or CT.)

Have they done a biopsy? A lung or kidney biopsy would be preferred test, since sinus biopsies are often (-) or inconclusive.

Also, I know she's had tons of docs on her case but has a VF doc consulted and agreed to the Wegs diagnosis?

[amysmom]

Sangye, Next appointment I will ask that. Thank you all for your interest and information.

[Sangye]

I hope your daughter keeps improving and feels as good as new very soon.

[Deanne Hull]

welcome anysmum

I hope you daughter gets all the help she needs looks like they are on the right track. best wishes i do hope she improves very soon.


Deanne