tissue samples

[LisaMarie]

Thanks elephant....i look forward to it

[jtausan]

Hi Lisa Marie,

I feel your frustration! The first time I went to mayo I didn't have a Wegs diagnosis and I was really frustrated because the docs said I had severe Acid reflux and they put me on Gerd meds. This is after I had a positive anca and a negative sinus tissue sample. All my other symptoms were totally wegs tho. I looked for other medical care cuz I knew I had wegs and I found a Rheumy who put me on methatrxate and prednisone. I have now been on it a year and don't feel much better. I am leaving on Tuesday for mayo, I have appts starting wednesday. I also see Dr Specks this time and am very happy about that. My Subglottic Stenosis is so much worse and am also seeing the throat specialist. I can't live anymore with this tiny, tiny airway. I am just worried that they will tell me it's acid reflux again and won't do anything. My mom is going with me so I have another voice also. I ilk keep everyone posted on my visits and I wish you luck, Lisa Marie.

Jodi

[JanW]

If they scope you they can easily see the stenosis, so there should be no problem there.

[Sangye]

Glad you're going back, Jodi. Jan is right-- they should be able to see it and treat it no problem.

[drz]

Hi Lisa Marie,

I feel your frustration! The first time I went to mayo I didn't have a Wegs diagnosis and I was really frustrated because the docs said I had severe Acid reflux and they put me on Gerd meds. This is after I had a positive anca and a negative sinus tissue sample. All my other symptoms were totally wegs tho. I looked for other medical care cuz I knew I had wegs and I found a Rheumy who put me on methatrxate and prednisone. I have now been on it a year and don't feel much better. I am leaving on Tuesday for mayo, I have appts starting wednesday. I also see Dr Specks this time and am very happy about that. My Subglottic Stenosis is so much worse and am also seeing the throat specialist. I can't live anymore with this tiny, tiny airway. I am just worried that they will tell me it's acid reflux again and won't do anything. My mom is going with me so I have another voice also. I ilk keep everyone posted on my visits and I wish you luck, Lisa Marie.

Jodi

I remembered when I was scoped because of trouble swallowing and feeling sore in throat area. One doctor thought it was the Wegener's attacking my throat area, but the one with more experience recognized the symptoms as inflammation and swelling cause by
GERD. They doubled my meds for GERD and the symptoms subsided. I was very relieved to find out I was not having stenois from Wegener's disease. If the problems are caused by irritation from GERD; it can be treated usually by changing the meds which seems easier than surgery to me.

[JanW]

I was treated for GERD, before I was ever scoped. It wasn't until someone actually scoped me that they immediately recognized the problem as being scarring around the vocal chords.

[LisaMarie]

Hi Lisa Marie,

I feel your frustration! The first time I went to mayo I didn't have a Wegs diagnosis and I was really frustrated because the docs said I had severe Acid reflux and they put me on Gerd meds. This is after I had a positive anca and a negative sinus tissue sample. All my other symptoms were totally wegs tho. I looked for other medical care cuz I knew I had wegs and I found a Rheumy who put me on methatrxate and prednisone. I have now been on it a year and don't feel much better. I am leaving on Tuesday for mayo, I have appts starting wednesday. I also see Dr Specks this time and am very happy about that. My Subglottic Stenosis is so much worse and am also seeing the throat specialist. I can't live anymore with this tiny, tiny airway. I am just worried that they will tell me it's acid reflux again and won't do anything. My mom is going with me so I have another voice also. I ilk keep everyone posted on my visits and I wish you luck, Lisa Marie.

Jodi

wish you all the luck....write down anything you want to ask...I spoke with Dr Specks about Gerd...I have "silent reflux and my vocal cords are not irriatated.....so Gerd did not cause my stenosis...I have never had any inflamation to my vocal cords...I took my sister in law with me...she was great and kept me grounded...We stayed at the travel Inn for 57.00 a night it has free breakfast and coffee and juice all day...plus a micro wave and fridge in the room ...parking is free.....and they hold reservations til 4pm...keep me posted and good luck...I go back May 19th