beanie
11-09-2009, 06:50 PM
Hey guys,I am new to this site,was told about the site from another WG patient,and she is right this might be the best site on the web that deals with WG.
I was DX with wegeners a couple years ago,when it started i was diagnosed with everything from the flu to uvietus.I had completly lost my voice and eyes where red and swollen shut,my trachea had closed up alot which made it really hard to breathe(the Dr. said i had asthma,he was wrong on that one)had all the usual joint pain,and to top it all off i had saddle nose
Finally my local Dr, sent me to an eye spec.and he wanted me to see a rheumatologist.and after many test he decided i had WG and was referred to johns hopkins in baltimore.The doctors at hopkins have taken really good care of me I was started on methotrexate 25mg once a week bactrim,folic acid and prevacid. It seems like it took forever to finally get it in remission but after about 6 months i was told that i was finally there.
I have had several surgeries along the way including surgery to remove scar tissue from my eyes and a trachea surgery to open me up so i can breathe and the surgery to fix my saddle nose.they had to take a rib from me and place it in my nose to make the bridge,but it was well worth it,and i can also breathe thru my nose now so i think they did a good job with it.
If anyone would like to send me a msg to discuss WG or just to chat feel free.I will be checking my msg box often,and if anyone has been recently DX with WG keep your head up and be optimistic it gets better
MIKE
I was DX with wegeners a couple years ago,when it started i was diagnosed with everything from the flu to uvietus.I had completly lost my voice and eyes where red and swollen shut,my trachea had closed up alot which made it really hard to breathe(the Dr. said i had asthma,he was wrong on that one)had all the usual joint pain,and to top it all off i had saddle nose
Finally my local Dr, sent me to an eye spec.and he wanted me to see a rheumatologist.and after many test he decided i had WG and was referred to johns hopkins in baltimore.The doctors at hopkins have taken really good care of me I was started on methotrexate 25mg once a week bactrim,folic acid and prevacid. It seems like it took forever to finally get it in remission but after about 6 months i was told that i was finally there.
I have had several surgeries along the way including surgery to remove scar tissue from my eyes and a trachea surgery to open me up so i can breathe and the surgery to fix my saddle nose.they had to take a rib from me and place it in my nose to make the bridge,but it was well worth it,and i can also breathe thru my nose now so i think they did a good job with it.
If anyone would like to send me a msg to discuss WG or just to chat feel free.I will be checking my msg box often,and if anyone has been recently DX with WG keep your head up and be optimistic it gets better
MIKE