In need of support

[zizzcat]

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hi
its been a few years since I've been here. Was sick off and on and had trouble keeping up with everyone. I truly appreciate the support and info I got at the time.

i have not been diagnosed with wegner's but with an undifferentiated immune disorder.
because I do not test positive, i have all the symptoms and many complications. My c r protein for the past 8 months has ranged between 18-25. I have been taken off 100 mg of my 200 imuran and all of the plaque nil. They plan to take me off the rest of the imuran in a few weeks. Am being referred to a local rheum doc. John Hopkins does not take my insurance. I am being treated by a teaching hospital, UVA. Am back on pain pills and the ulcer in my perforated septum is active again and slowly eating away the cartiledge. My kidneys are deteriorating again and my lungs are shot. Thank God that my pulmonologist has me on 25 mg of prednisone daily or I don't know how I would get around, get anything done or stand the pain.

i got my 2nd nasal biopsy of the month today. My ENT is really concerned.

I I am doing what I can but could sure use some earnest prayers.

Hope

[Pete]

Hi Hope,

Could/would your doc at UVA consult with a wegs specialist somewhere? I had a similar experience at Ohio State when I realized that my doc maybe wasn't up to full speed on wegs. I self-referred to Cleveland Clinic and am now seeing a true wegs/Vasculitis specialist there.

Hope you find top notch care soon!

[Debbie C]

Hope, sorry to hear to are having such a problem with your drs. Have you checked with the VF website to see if there is a specialist near you ? In my newsletter I got from them there is also another support group located in Va. Its called the Hampton Roads support group and run by Greg Lesko phone 757-746-6936 and Lynn Lesko 757-746-7122. there email address is [email protected] . Maybe they can steer you to some good drs that are close to you, but don't leave us. Keep us posted on what you find out. If your ent is concerned maybe he knows someone. Good luck and I will say a prayer for you :hug2:

[debra]

Hope, yes I will pray for you, already done and I will continue... I wish the best for you... Debra...

[woz]

I was never officially diagnosed with wegs, but my rheumy treated the symptoms, which pointed in that direction, she told me I had some sort of autoimmune disease, most likely wegs, based on my symptoms, and started me on 200mg cyclophosphamide and 100mg prednisone, if my rheumy did not act as fast as what she did, I wouldn't be where I am now.

All the best Woz...