I don't want to sound harsh at all, because I never want to question the health decisions other WG patients make for themselves. However, you seem to have a ton of the symptoms that are pointing to having Wegs, but are not pushing hard enough to get the definite diagnosis made and start treatment for it. Wegs is a deadly disease, and without treatment, you've pretty much given yourself a death sentence within the next 1-2 years. I understand that you are currently seeing a rheumatologist, as well as a lung specialist and pain management doctor....but are any of these specialists pushing you to get SOMETHING biopsied to 100% verify the Wegs and then get on a treatment plan for it? If your specialists aren't trying their hardest to make sure you either do or do not have Wegs, then you need new doctors. You are lucky that you have made it 3 years without any treatment for Wegs if you do end up having it. You have GOT to get an affected organ system biopsied to see if you even have Wegs. The lung doctor could biopsy the nodules in your lungs; an ENT could biopsy your sinuses, your nephrologist could biopsy your kidneys since you obviously have kidney involvement. You just need to get on someone's case to get a biopsy done.
Have you even had the lab work done for Wegs? Have you had an ANCA panel run (should check your pANCA, cANCA, MPO and PR3)? Have they checked your ESR (sed rate) or CRP (C-reactive protein)? These things can help your rheumatologist see if your bloodwork is pointing to Wegs as well. I would be finding another rheumatologist myself, because yours seems to have just let these issues fester for 3 years and that is unacceptable. I'm upset for you - but you also have to be your own #1 advocate. If I had listened to my rheumatologist and just stayed home a couple weeks ago and NOT gone to the ER, I would have died. She told me on 3 separate occasions over 2 weeks that I would be fine, that I just needed to stop the Cytoxan and let my body heal and my bone marrow would start making blood cells again. Taking her advice got me very close to death and I am SO VERY THANKFUL that I listened to the voice in my own head that told me something was deadly wrong. You have got to stand up for yourself, because you are the only person that cares about yourself more than anyone else.
If you do have Wegs, you have got to get started on a treatment plan for it. You need to be on a chemo drug and steroid, or on Rituxan IV, or SOMETHING. You cannot just sit there with Wegs and hope for the best. No treatment on Wegs pretty much equals death. This is an extremely serious situation and disease. Pleeeeeeeeeeeeeease take this more seriously and go find better help. Do it for your daughter. Get serious about this and get it taken care of.
Teri
Teri from Texas
Diagnosed w/WG March 2015
"Lord my God, I called to you for help, and you healed me." - Psalm 30:2
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