Re: New Here - Dx question
Since you’ve already been to Mayo (I assume in Rochester), you may want to get an appointment with one the vasculitis docs like Ulrich Specks.
Re: New Here - Dx question
Yes, Rochester. Thank you.
Re: New Here - Dx question
A lot of the auto immune diseases are similar in their manifestations and often they are treated in a similar manner like using pred meds and something to suppress the immune system. I would think that who ever you saw at Mayo could easily consult with another expert to help you feel a bit more certain that they have the best diagnosis for treating you. Although the treatment may well be the same.
Re: New Here - Dx question
Quote:
Originally Posted by
drz
A lot of the auto immune diseases are similar in their manifestations and often they are treated in a similar manner like using pred meds and something to suppress the immune system. I would think that who ever you saw at Mayo could easily consult with another expert to help you feel a bit more certain that they have the best diagnosis for treating you. Although the treatment may well be the same.
Thank you. I actually made an appointment with a local vasculitis specialist (who's own father apparently had the disease), so hopefully I'll get more answers before too long.
Re: New Here - Dx question
Hi Weglee,
Your father has vasculitis? That’s interesting! There has been several debates about vasculitis possibly being genetic.
First off, when I was first diagnosed I was placed on methotrexate & prednisone. It worked for several years.
When I first started showing symptoms the Drs thought I had a lacrimal gland tumour. My eye lid swelled. Then I got arthritis. Then I got rashes around my eyes. Then I got scleritis, tinnitus, bleeding lungs, ect.
So your symptoms sound very familiar!
Hope you get a diagnosis & treatment soon!
Sent from my iPhone using Tapatalk
Re: New Here - Dx question
Hi Natrice,
Thanks for the response! Sorry for the confusion... the Dr I'm going to see, his father had vasculitis (not my father).
Re: New Here - Dx question
wegLee: From my experience so far (as a patient) there are no fixed "markers" in the tests which will help the doctor determine that its Wegeners. From the symptoms you mentioned and responses to the meds - its likely to be Wegs but doctors would know the best. Be patient, think positive and listen to your body. Ask and share with yourself, your doctors and great community source like this forum. Good luck and hope you feel better soon!
Re: New Here - Dx question
Shank, thank you so much for your reply!