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Welcome, Holly! Your story sounds like many on this site. You have made great strides -- listen to your body and be a strong advocate for yourself! It'll make all the difference! My WG was confirmed by kidney biopsy supported by ANCA & other tests. The road is long, but you'll have so much support thru this forum. Good luck tomorrow and I hope you find the answers you need!
KB
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Holly, welcome to this most exclusive of clubs. Yes I am afraid it does appear that you may have this fun disease and have been forced to become a Weggie like the rest of us.
Jim
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Hi Holly,
Welcome to this wonderful site and oh so wonderful disease.
I seriously pray for you that it isn't WG but I'm glad you are getting great care.
If it is WG, and reading your story sounds like it, then you have found the right people to help you through the ups and the downs.
Remember, that no question is too small or silly on this site and everyone is here to help in whatever way or means they can.
Take care and good luck with the results
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Hi Holly, welcome. I am agreeing with phil , have you had an Anca test? This will let you know if its vasculitis related . My daughter had a persistent red eyes and after four doctors and all sorts of drops nothing helped. Went to a rheumy and after a blood panel she had a Positive Anca and MPO we new what we were dealing with was Vasculitis. Then the next step is finding out the actual diagnoses. Under auto immune vasculitis there are several diagnosis but most of them are treated with the same medications. My daughter is between MPA or Wegener's but there about the same except for the granulomas in Wegeners same treatment. Definitely knowing if you have a vasculities will help. If you haven't had it ask for an Anca and like phil said a sedimentation (not sure spelling) but it for diagnosing inflammation. I also believe a chest scan should be done to clear id you have any wegs in the lungs. Please keep us in touch. We all learn from each others experience even though sometimes very different.
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Welcome, Holly. Hope that you got good news today or something definitive at the very least; as bad as Wegs is, going through the finding out what's wrong phase is even worse. Not only because of the exaspration of it all (not to mention the pain), but also because of the lack of a full-on treatment regimen. So, hope your mystery is finally solved and if it's Wegs we shall all herein join you in that regret even as we welcome you to this our other family.
Please let us know how things went. The best to you, Ron.
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Holly,
Welcome! As others have said you should check your ANCA and your sed rate (if you haven't already), but I have fairly full blown Wegs (doing my second time of CTX) and have never tested positive for either in over 4 or 5 years of active symptoms. So it is a good guide but don't feel disheartened if you do not show positive there.
Anna
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Hi Holly, welcome to the group. Everyone has offered you really good advice, so I'm just gonna say hello. :smile1:
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Glad you made it and looking forward to you getting better real soon.
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Buenas.....Holly! Great site.