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

[amysmom]

I found my way back to this Forum! So much has happened since I posted here last. I wish that I could say that my Daughter is all better but unfortunately that is not the case. The past 5 years have been a wild rollercoaster ride. She has numerous health problems/DX and spends more time hospitalized than not. Side effects from meds are an issue right now. Due to her immune suppression from(Cellcept) she is currently dealing with CMV(CYTOMEGALOVIRUS)Hepatitis. She also picked up Mycobacterium gordonae in her right lung. Both of these are not normally serious in a "normal" person but in the immunosuppressed it's a different story. Did I mention a grapefruit sized abscess containing MRSA in her lung? I know that these are life saving drugs as is Prednisone but carry serious side effects and leave you susceptible to lots of nasty things. She also has 2 fractured vertebrae that they contribute to long term use of steroids.Her labs are all over the place. Spleen is enlarged as well as her liver. There is a host of other issues both autoimmune and drug related.I could go on but I think you get the idea that things are not good. On the bright side she is currently -ANCA. Question or comments welcome. Thanks for letting me vent. It is just one of those days...

[Pete]

Vent away!!! That's why we're here. Sorry your daughter is having such a rough time. Hope she starts getting better soon.