Newby

[gunnyl]

Hi,
I''m new to the sight. I was recently diagnosed with Weg's.
I went into the ER suffering from pain in my muscles and joints, coughing blood and my eyes were inflamed to the point I was blind.
The infectious disease Dr. Misdiagnosed me with West Nile Virus but I was lucky enough to have an Optthalmologist who began treating my eyes with prednisone drops as well as 3 other drops that dropped the swelling in my eyes and ultimately saved my vision. I was discharged with the WNV diagnosis and sent home.
I continued to get worse while at home and 4 days later my hands had swollen to the point I couldn't move my fingers and my joints to the point I couldn't walk.
My wife called the infectious disease Dr. and told him she was bringing me back to the ER. He told her I had WNV and there was nothing they could do but have me ride out the symptoms. We went back to the ER and my wife used the Dr's name to get me in quickly. To my luck there was a pulmonologist in the ER who came in to see me. He immediately went to my chart after examining me and saw that the tests ordered by my rheumatologist during my first stay had come back positive for the ANCA and called her to go over my symptoms and test results and they diagnosed me with Weg's while I was still in the ER. He admitted me to the IMCU and they began IV Steroids and Antibiotic treatments immediately.
I have since been discharged and have been home for a week. My Rheumatologist is awesome, I have her personal cell # and her nurse briefed the staff during my first appointment that when I call and need a same day appt. that no matter what I am to be put on the schedule.
I am on Cytoxan and prednisone and bactrim and so far seem to be responding well. I have suffered some V Tach episodes and had to be Put on beta blockers for that.
I am fortunate that it hasn't affected my kidneys yet and I hope that helps with my recovery and getting this into remission.
Most of all I am fortunately to have a wife who knows me intimately and who is very persistent and didn't trust the infectious disease Dr. I was also fortunate to have the right Dr's in place the second time around.
I should note that I tested positive for the West Nile Anti-body but not the active virus so I was exposed to West Nile but that could have been 6 months ago or 6 years ago!
Regards,
GunnyL

[drz]

Hi,
I''m new to the sight. I was recently diagnosed with Weg's.
I went into the ER suffering from pain in my muscles and joints, coughing blood and my eyes were inflamed to the point I was blind.
The infectious disease Dr. Misdiagnosed me with West Nile Virus but I was lucky enough to have an Optthalmologist who began treating my eyes with prednisone drops as well as 3 other drops that dropped the swelling in my eyes and ultimately saved my vision. I was discharged with the WNV diagnosis and sent home.
I continued to get worse while at home and 4 days later my hands had swollen to the point I couldn't move my fingers and my joints to the point I couldn't walk.
My wife called the infectious disease Dr. and told him she was bringing me back to the ER. He told her I had WNV and there was nothing they could do but have me ride out the symptoms. We went back to the ER and my wife used the Dr's name to get me in quickly. To my luck there was a pulmonologist in the ER who came in to see me. He immediately went to my chart after examining me and saw that the tests ordered by my rheumatologist during my first stay had come back positive for the ANCA and called her to go over my symptoms and test results and they diagnosed me with Weg's while I was still in the ER. He admitted me to the IMCU and they began IV Steroids and Antibiotic treatments immediately.
I have since been discharged and have been home for a week. My Rheumatologist is awesome, I have her personal cell # and her nurse briefed the staff during my first appointment that when I call and need a same day appt. that no matter what I am to be put on the schedule.
I am on Cytoxan and prednisone and bactrim and so far seem to be responding well. I have suffered some V Tach episodes and had to be Put on beta blockers for that.
I am fortunate that it hasn't affected my kidneys yet and I hope that helps with my recovery and getting this into remission.
Most of all I am fortunately to have a wife who knows me intimately and who is very persistent and didn't trust the infectious disease Dr. I was also fortunate to have the right Dr's in place the second time around.
I should note that I tested positive for the West Nile Anti-body but not the active virus so I was exposed to West Nile but that could have been 6 months ago or 6 years ago!
Regards,
GunnyL

Sorry you have had to seek out this forum but glad to hear you finally got a correct diagnosis so they can begin effective treatment which should help you with recovery from your symptoms. Welcome. This forum is a great source of support and info for any questions you have.

[Sangye]

Hi Gunny, welcome to the group. I'm glad that your case was diagnosed fairly quickly. Sometimes it can drag on for years while damage is done.

Here is a thread with info for you: http://www.wegeners-granulomatosis.c...need-know.html

Please feel free to post any questions, comments, etc... that you wish. This is a wonderfully supportive and informed group.

[pberggren1]

WOW! I am sure glad you got dx quickly. And it sure sounds like you have a good doc. I am curious though, where are you from and where is your doc at? I am just curious if you are at a major center and if your doc is a vasculitis specialist.

[gunnyl]

Phil.
I live in Denton County Texas just North West of Dallas.

[elephant]

Welcome, and I find it interesting that some of us get a fast heart beat with the wegs disease...but it could sometimes be side effects to the medications. Cipro, levaquin, are the big ones that are known to cause the heart rate to go up. I am on a beta blocker too.

[gunnyl]

Thank you for the welcome and the comments, I sought out this forum while I was still in the hospital and have found it both informational and motivating.
Reading others stories and experiences has let me know that although not curable I will be able to manage and live with Weg's. My main learning curve has been to developed patience and understand that there are certain factors I can't control so I focus on gaining knowledge and keeping a positive mental outlook!
GL

[RudiK]

Hello Gunnyl, welcome to the site. As most have said already, this is the best site to access if you need more info about the WG. When you read though the many posts, you'll find that most of us have gone through these problems of doctors not recognizing the disease and delaying the proper treatment. Let's hope your doctors will give you the proper treatment now and force the WG into remission. Good luck and all the best. Rudi K, Socorro, TX.

[Psyborg]

Welcome to the site Gunnyl. I think you'll find this to be a great information resource. I know it's helped me immensely.

[Sangye]

My main learning curve has been to developed patience and understand that there are certain factors I can't control so I focus on gaining knowledge and keeping a positive mental outlook!
GL

I think we're all on that same learning curve. I sure am. Whew.