Damn, its good to be heard!! (:>})

[Guest guest]

Hi everyone. Gosh, it has been sooo long since I have been able to post! You all have been, and are in my thoughts and prayers!

Okay, I went to see my ENT today to see if he could tell me how or why I got my voice back. He did not scope me like I hoped, but he did examine my throat, ears and nose and this is what we know.

My vocal cords are still inflamed/swollen; so much so he could see the blood vessels or vasculitis with the mirror and without strobing me. However, he didn't seem to think the cartilage supporting them was as inflamed. He did say that was miraculous. I posed the question to him about the damaged cartilage possibly becoming the hard or firm scar tissue or fibrous tissue associated with the RP, and he thought it possible but could not give me a definite answer. I told him he was supposed to know the answers (LOL) and he said that there is still so much they don't know. There is so much to learn about this damn disease and I think he is as baffled as I am!

He went over all the medications I've been on, and also the ones I have stopped taking or are in the process of quitting.

As far as from the medicinal (RX) standpoint, it could be a combination -- I have been reducing my prednisone and am now on 1 mg a day; and the buildup in my system of the Enbrel/Imuran combo I've been on for more than a year. I know this sounds strange, or at least it did to me, but he said that the long-term use of the prednisone causes more inflamation/adema and that it could have contributed some to my voice not coming back, but the adema caused by steroids is usually in soft tissues like the vocal cords. Unfortunately, he could not give me any definite answers other than my nose is getting crooked and misshapen and my larynx isn't going to collapse -- (he couldn't say the same about my trachea). He told me to keep doing what I've been doing and hopefully we could come up with some concrete answers.

I was so hoping to give you all more to go on, but at this point, I can just thank God for having my voice back and say only he knows how it happened.

God bless you all and know you are loved. Take care!

Love, hugs, and smiles,

L. (:>})

[Guest guest]

Hi everyone. Gosh, it has been sooo long since I have been able to post! You all have been, and are in my thoughts and prayers!

Okay, I went to see my ENT today to see if he could tell me how or why I got my voice back. He did not scope me like I hoped, but he did examine my throat, ears and nose and this is what we know.

My vocal cords are still inflamed/swollen; so much so he could see the blood vessels or vasculitis with the mirror and without strobing me. However, he didn't seem to think the cartilage supporting them was as inflamed. He did say that was miraculous. I posed the question to him about the damaged cartilage possibly becoming the hard or firm scar tissue or fibrous tissue associated with the RP, and he thought it possible but could not give me a definite answer. I told him he was supposed to know the answers (LOL) and he said that there is still so much they don't know. There is so much to learn about this damn disease and I think he is as baffled as I am!

He went over all the medications I've been on, and also the ones I have stopped taking or are in the process of quitting.

As far as from the medicinal (RX) standpoint, it could be a combination -- I have been reducing my prednisone and am now on 1 mg a day; and the buildup in my system of the Enbrel/Imuran combo I've been on for more than a year. I know this sounds strange, or at least it did to me, but he said that the long-term use of the prednisone causes more inflamation/adema and that it could have contributed some to my voice not coming back, but the adema caused by steroids is usually in soft tissues like the vocal cords. Unfortunately, he could not give me any definite answers other than my nose is getting crooked and misshapen and my larynx isn't going to collapse -- (he couldn't say the same about my trachea). He told me to keep doing what I've been doing and hopefully we could come up with some concrete answers.

I was so hoping to give you all more to go on, but at this point, I can just thank God for having my voice back and say only he knows how it happened.

God bless you all and know you are loved. Take care!

Love, hugs, and smiles,

L. (:>})